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Why are these children so special?

Through the power of photography we are working to bring some awareness to some often hidden diseases the young people of the world are facing each day. These children are not your typical everyday kids. They each have a special story to share. No two stories are the same, but they each bring hope and inspiration to all who take time to read them. We invite you to celebrate with us as we honor our team of heroes from around the world who would like to share their stories with you.

Meet our Newest Heroes

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After 11 years of trying to start a family it would indeed be a miracle if we were. At 33 weeks I was admitted to the hospital because my blood pressure was so high. We soon discovered that I had pre-eclampsia. I remained in the hospital until Paula was delivered via emergency c-section on November 17, 2009. We knew that this baby would truly be a miracle but until she was born we didn’t know she would also be a hero. Paula weighed 5 lbs 8 oz and was 18 ½ inches long when she was born. Because she was a preemie and due to my being insulin dependent they immediately whisked her away to the NICU. While I was in recovery my husband went to see our little miracle. The staff told him that she was having trouble regulating her blood sugar and as soon as it was stable she could come to our room. Later that night when he went back to see her, the Nurse Practitioner pulled him aside and told him that they discovered that Paula had a heart murmur. He was assured it was nothing to worry about but little did we know we would be doing a great deal of worrying. They scheduled an ECHO just as a precaution and again we were told that her heart murmur was nothing to worry about. We were handed a slip of paper and told that they had made us an appointment with a Pediatric Cardiologist in two weeks. On February 24th we handed our baby girl over to the surgical staff at Golisano Children’s Hospital in Rochester, NY. That was the hardest and worst thing either of us has ever had to do. After 5 long hours her surgeon, Dr. Alfieris, told us that he had done a complete repair of Paula’s heart defects. She stayed in the hospital for 9 days and amazed everyone with how well she did every step of the recovery process. Although her pulmonary valve is still narrow and it has a small leak we are extremely hopeful that Paula will not need another surgery. Since her surgery Paula has met and exceeded every single milestone and goal set by her Doctors. She is standing by herself now and even walking around the perimeter of large objects while holding on to them.
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Addie Grace was adopted from China when she was 20 months old. At that time, she had already overcome living in an orphanage her whole life and also having heart surgery to correct a CHD when she was 8 months old. It pains me to think that she had to go through heart surgery alone without a mom or dad to hold her and tell her that they loved her. She had a moderate sized hole in her heart that has been fixed completely. She also was diagnosed with strabismus but that was cleared up by the time we adopted her. She is old enough to understand now that she has a large scar because the doctors had to fix her heart. She truly has the heart of a hero!
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Jaxon was born with several severe heart defects. We were told he would need a three stage open heart surgery in order to survive. He had his first open heart when he was 11 days old and the next when he was 6 months old. We are now getting very close to having his 3rd open heart. In the past year Jaxon has had two ear tube placements, a bronchoscopy, dental surgery and has recently endured a bilateral stroke. Jaxon has to take a lot of medicine and two injections a day. He has physical therapy, occupational therapy and speech therapy not to mention all the Dr.’s he see’s and the tests and bloodwork’s he does routinely. Throughout it all he smiles. He brightens my day everyday. Jaxon has two sisters who also love him very much and have given up a lot for us to be able to care for jaxon. This paragraph cant even sum up all the heartbreaking things hes endured and all the scenarios we have had to imagine. He is very brave and the the strongest little boy I know.
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On April 27, just after her third birthday, our daughter, Avery, was diagnosed with type 1 (juvenile) diabetes. She will be insulin dependent for the rest of her life. She is required to constantly check her blood sugar by pricking her tiny fingers 10 or more times a day – even twice in the middle of the night. Everything she consumes must be measured and weighed and she must stick to a tightly controlled eating schedule. She continually battles both high and low blood sugar which can prove deadly. While on injection therapy, she got 5 or more shots of insulin per day. She now wears an insulin pump that is attached to her body 24 hours a day. We must insert a small catheter under her skin every 2-3 days. This is where insulin is continually infused into her body. But this insulin that she takes is not a cure; it is merely life support. Avery is a trooper and endures it all bravely. The injections and insertions continue to be heart wrenching, as she cries and fights with each one. However, Avery is still full of smiles, laughs, and 4 year old spunk, amidst her daily diabetes routine. Avery continually amazes us and is a blessing to have in our lives as a daily reminder of spirit, humility, and a positive attitude.
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On Friday January 18th, 2008, Benjamin Benaud Watters, “Benny”, was diagnosed with a brain stem tumor (Diffuse Intrinsic Pontine Glioma – DIPG). It all began back in early November 2007 when his left eye started to cross. It was thought he had Strabismus, glasses and patching were prescribed. The eye failed to improve, and so he had an MRI on January 18th, 2008. We were completely shocked when the tumor was discovered. Benny participated in a Phase II Clinical Trial sponsored by the Children’s Oncology Group (COG) and carried out at Children’s Memorial Hospital in Chicago, USA. Benny completed 6 weeks of radiation combined with an anti-cancer medicine called Motexafin-Gadolinium (used as a radiosensitizer) on March 11th, 2008. His first MRI post treatment on April 24th 2008 showed a 44% reduction in the tumor. The following 4 MRI’s up until January 22nd, 2009 showed the tumor as stable. Benny’s most recent MRI on March 23rd, 2009 showed a slight increase in the tumor. Since then Benny’s tumor has progressed and he is now at home spending time with his family! Benny is a happy, active, sports loving 5 year old, adored by his big sisters Lily and Isabella and parents Lisa and Brendan. He loves The Wiggles, Dora and Bunnytown, fancies himself as a rock star on his pink guitar, is a superstar on the computer and a master of Nintendo Wii.
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My Name is Jacob Jason Moore. I am 11yrs old. Born May 25th 1999. My mother gave birth to me 2 months premature. I was born with a club foot, cleft palate, and a rare chromosome syndrome which occurs only 1 in 85,000 births. It is called 49xxxxy syndrome. A variants of Klienfelters Syndrome. My Favorite things to do are: Play my guitar as often as possible! I love to take walks with anyone who will walk with me! I Love being outside and love to swim! I am a hero because I live life in a very different way than most could comprehend! Normal things that people take for granted causes me to suffer from severe anxiety. Like leaving or coming to and from a place. Certain clothes bother me. I suffer from arthitis pain, I can not talk like my sisters do, but I understand what they are saying and I get frustrated that I can’t tell people what I want sometimes! People judge me because I am different, but underneath it all I am a very happy boy and just love meeting knew people. Things take me longer to learn, but I will get there in my own time and own pace! I am strong and a fighter for this I am a Hero! One thing I would tell you about this syndrome is that you may have it harder than most, but believe in yourself and take your own time, and you will be able to do what you want! It is all about what you set your mind too, and you honestly believe that you can do it! Remember you are who you are for a reason! Be proud of who you are!!!!!!!!!!!!!!!
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Chloe Christina was born May 9, 2006 – a perfect, beautiful little angel from God. She was an easy baby and a very happy baby. Her big brother, Eli, was so excited to have a little sister to love. Although Chloe was so perfect and beautiful, she had her struggles to overcome – Congenital Muscular Torticollis (also known as “twisted neck”) caused her to tilt her head to the right most of the time. And because of the CMT, she developed something called Plagiocephaly (“flattened head syndrome”). She wore a corrective helmet for 23 hours a day for 5 months, which helped with the plagio. But after several months of physical therapy, her head tilt was still so bad she could hardly move her neck and it was causing developmental delays. Chloe had endoscopic surgery to release the tight muscle in her neck in December 2007. The surgery went well, and Chloe seemed to be doing great for the next couple of years. But in April 2010, out of nowhere, Chloe started having seizures. A few days later she was diagnosed with Tuberous Sclerosis, a rare genetic disorder that can cause tumors in the brain, heart, kidneys, lungs, skin and eyes. Chloe is just as sweet, happy, funny and vivacious as she always has been. She will always be our beautiful little princess no matter what. She fills our lives with joy every day, and we pray she will live a long, healthy life despite the obstacles she faces. Even though the doctors say her disease is incurable, we will continue to ask the Lord to heal her, and we will continue to pray for a cure for this disease for all those in the world who suffer from it.
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Amelia was diagnosed prenatally with T21 and Tetralogy of Fallot. Since her birth we have been told to expect many terrifying things, but are excited to say she is thriving. She will be receiving Open Heart Surgery in August when she is only 4 months old. No parent can even prepare themselves for something as scary as a sick child, but we believe God has blessed us with the gift of our beautiful daughter. We received our first smile from Amelia at 5 weeks. That smile melted away all of our fears.
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Cooper is a 5.5 month old baby boy. He never gained weigiht properly and at birth was hospital along with hospitalized at 5 months old. He was found to have failure to thrive at only weighing in at 11 lbs at 5.5 months old and tests lead doctors towards a metabolic and muscle disease along with cystic fibrosis suspicion. He is very strong and continues to amaze everyone he meets! His challenges do not keep the smile away from his face!
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Jack was born on June 22, 2009. 5 days after he was born he was diagnosed with Trisomy 21, or Down syndrome. Since his diagnosis, he has had 2 surgeries and been hospitalized 3 separate times. He receives therapy 2 times per week and is on a special diet. He is a beautiful boy, full of joy. His immune system is weak and so are his muscles, but his heart is strong and his smile is huge!
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Our precious Isabel Ruth was born on June 24, 2008 with a Congenital Diaphragmatic Hernia. This is a severe birth defect in which the diaphragm doesn’t fully form in utero. this allows the abdominal organs to move up into the chest cavity, significantly restricting lung growth. Our tiny little miracle endured many surgeries, including the hernia surgery, ECMO, PDA (heart defect) repair, and Fundoplication and g-tube surgery due to aspiration issues. Isabel was also diagnosed with a disease called Pulmonary Arterial Hypertension which is secondary to her Chronic Lung Disease. Our princess was able to come home after one hundred and fifteen days in the Neonatal Intensive Care Unit! Isabel has been fighting ever since! She is home on oxygen and has a feeding tube. Isabel also has some severe developmental delays including Hypotonia. Despite Isabel’s rough beginning, she is a happy and joyful little girl! Isabel amazes us every day, and her resilience teaches us volumes of the human spirit! As Isabel continues to thrive, we are confident that God has huge things in store for our little girl!
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On February 8th 2009 James seemed to be coming down with a stomach bug after a tough afternoon we brought him to the doctor when he started to seem lethargic. A few minutes in the doctors office and he stopped breathing. An ambulance was called and were rushed to the hospital. After a series of tests we realized he was in diabetic ketoacidosis. We spent one week in ICU and another week in recovery. James was only 21 months when all this started and he was a fighter from day one. Type 1 diabetes is an autoimmune disease where your body attacks and kills your pancreas. Without your pancreas to produce insulin you must take injections of insulin. James takes about 5 injections before every meal and has to take blood from his finger 10 times a day. In the first year with diabetes he has taken 1,300 injections and 3,330 finger sticks. He has recently gone on an insulin pump that minimizes the amount of injections a day. My son before the age of 2 became my hero. There is something so courageous about a two year old taking multiple injections a day to keep himself alive. We dream of having a cure before the complications of diabetes catch up to him. He is an amazing child and the true definition of a little hero.
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This is Gracelyn and she has Cystic Fibrosis. Every day she has to take several medications, breathing treatments and chest percussion therapy to help keep her healthy. Even though there is no cure for her disease, she never stops fighting. She is the happiest, most outgoing baby you will ever meet. You would never know by looking at her what she goes through on a daily basis. She is a hero in my eyes. And every day I tell myself that if she an keep smiling through all of this, so can I.
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Zoe was born at the end of December in New York City. Before birth we knew her heart was going to be repaired within the first few months of her life. When she was born she was so full of energy, such a happy little baby. She loved to eat, play and sleep. At barely one month she could track different objects with her eyes and started smiling soon after. Our visits to the cardiologist were full of optimism since she was doing so well. At six weeks old, she went into congestive heart failure overnight. Her heart was working too hard and she needed external help to deal with it. She was put on a few medications and sent home after a week in the hospital. She did relatively well for a few days, but a week later, she stopped eating, slept all day, and we took her back to the hospital. We spent a whole week there, and she turned two months there. Every imaginable test was done, MRIs, EEGs, blood tests, scans, x-rays. My little warrior was so brave and even though she was poked multiple times a day she kept her good humor. After a few days we went back home, Zoe with a feeding tube. She gets too tired eating and we need to help her. Now we are waiting to see if she grows enough so her heart is big enough to undergo surgery. In the meantime, she’s a happy little girl at home, and hopefully, soon enough all this will be a distant memory!
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Ava is 1 ½ years old. She has a duplication on chromosome #22. This results in very low muscle tone, feeding issues, and other medical complications and developmental delays in all areas. Although her diagnosis is not thought to be life-threatening, her prognosis is unknown. There is no way to know if she will ever walk or talk. She receives physical, occupational, and speech therapy each week. She is really making progress. She is still working on rolling over and holding her head up, but she is so much stronger than she used to be. We believe that she understands what she is being asked to do, but she can’t always get her body to do it. She keeps trying until she is successful. Ava loves to play with people and is extremely social. She will ‘talk’ and ‘tell stories’ to people. She loves playing peek-a-boo and beeping daddy’s nose. She loves being kissed, hugged, and tickled. Ava also likes to help mommy turn the pages in the books and watch her big brother, Jack, jump around and act silly. Despite her delays and low muscle tone, Ava has won the hearts of everyone near her. She tries and tries to get her body to work. She is the most persistent and motivated person I have ever had the pleasure to meet. We are so blessed to have her in our lives. She teaches us the true meaning of patience, determination, and happiness.
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Ramona was diagnosed with a complicated CHD–Hypoplastic Right Heart Syndrome–while still in the womb. Fortunately, she did so well after birth that she didn’t have to have her first heart surgery until she was 3 months old. After this heart surgery, she developed numerous complications and had to stay in intensive care. She wasn’t allowed to eat anything by mouth for 2 1/2 months. During this time, she received all her nutrition through iv fluids that went in through a line in her groin. After she got the go-ahead to start eating again, she had lost all interest in food, and eventually had a gastronomy feeding tube placed. Ramona spent a total of 3 out of the first 7 months of her life in the hospital, and has had 4 surgeries. She will be having another open-heart surgery when she turns 3 years old. Ramona has the most outgoing and sparkly personality, and even through all her hardships and hospital time, she has never stopped smiling and laughing. She even had nurses in the hospital competing over who was going to take care of her! Ramona is a complete joy, and every day my husband and I count ourselves lucky to have her in our lives.
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Christopher Pena was born in April 2008 with non-compacted cardiomyopathy. Non-compacted cardiomyopathy is a very rare condition in which the heart muscle remains sponge-like after birth, which causes the heart to be very weak. Christopher’s cardiomyopathy affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Christopher was not given very long to live. Six months at most When he was 45 days old, he was admitted into hospice care where he remained for 15 months. Christopher was released from hospice when an echo cardiogram showed that his heart function had tripled! And at 18 months, his heart function was almost normal. In February 2010, it was discovered that Barth Syndrome is the cause of Christopher’s cardiomyopathy. There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled. Given a life span of 6 months or less, Christopher celebrated his 2nd birthday this past April. The Pena family gives all glory to God for their little hero’s miraculous life!
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Liam also has a ectopic right kidney and hypoplastic right lung Born was 37 weeks – Liam has his first repair at 6 days. Unfortunately at 3 months Liam’s diaphragm re-herniated and he had to have another repair. Liam spent 5 months in Hospital, came home on oxygen and a NG Tube. 2 weeks before his first birthday he came off the oxygen. Liam had severe reflux and major feeding issues. At the age of 3 years a friend told us about a feeding clinic in Charlottessville, Virginia USA – we packed our family of 4 up and travelled from Perth Western Australia all the way to VA to have a 2 week stay at a feeding clinic. 5 minutes into the first day and our dear Liam swallowed food for the very first time. Seeing this was so amazing…a trip we would make again in a heart beat. Liam has been tube free from the age of 3 years and 9 months. Liam has a pectus excavatum its severe – nothing stops him! He does swimming, soccer and karate weekly and he LOVES IT!!! Liam has a zest for life – he is an absolute joy to be with, his strength and determination are inspiring – He is our hero!
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Jaslynn was diagnosed with retractable epilepsy at the young age of 6 months. Shis is currently taking four seizure medications and will be getting Temporal Lobectomy in May 2010 to help reduce her seizures. She is globally developmentally delayed, vision impaired, and has a brain abnormality. She has the sweetest personality and loves to be held and cuddled.
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Xavier Gallergos was born May 4th 2009 with Hypoplastic Left Heart Syndrome
He was born premature and had his first bypass operation at 36 hours old
and weighing 2 pounds 11 ounces. His first few weeks of life were very touch
and go. He had a second operation at 4 months old and will face another one
next year. Xavier is on lots of medications to substain his heart function
one being to prevent him from any further svt. He really is a hero!
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Brayton is a fighter. At the young age of 2 months old, he became very sick and began the fight for his life. He was diagnosed with a rare disorder called HLH and received his first chemotherapy treatment at 2 months old. On April 23, 2009, at the age of four months old, he received his life saving bone marrow transplant. A bone marrow transplant is the only known cure for this disease. Brayton fought an up hill battle spending 294 days living in the hospital due to complications. He is finally at home where he belongs doing better then ever as he continues on the road to recovery. He is nothing short of a miracle!
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Ruby is the youngest of 11 children.We found out about her diagnoses of Down syndrome when she was born.She spent three weeks in the NICU after her birth.She has been a wonderful blessing to our family. All of her siblings adore her! Even with everything she goes through she still is able to smile!
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My husband and I went through multiple fertility treatments to have our three-year-old son, Fletcher. So naturally I thought we would have to do the same to have any more children…Wrong! In May of 2008 I found out I was pregnant! We were overcome with joy, which then turned to concern because blood test showed Mary Caitlin might have down syndrome. We did not know for sure until she was born that she did have DS. But, I have to tell you, I would not take it away from her, it is who she is. She is beautiful, funny, silly, rotten, sneaky, cuddly, bossy, and she is our daughter! We have been blessed that she has had no major health issues so far. Her big brother adores her and she adores him. Our family is beautiful!
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I have two beautiful clildren. They were born with hypotonia. Aidan, 5 yo started OT and PT at 4 mos old and then ST and feeding therapy at 15 mos. Around that time he was diagnosed with global dyspraxia; a motor planning disorder that our neurologist likens to driving without the steering attached to the suspension. Aidan was always climbing on to ride- only to find himself facing the wrong way. He may know the word for something, or even be able to describe a letter or number, but at ceratin times there is a disconnect and he is unable to get his mouth to say what is in his mind. He was also diagnosed with sensory processing disorder; he flinched when other children came near him, cried and covered his ears in crowds or at parties and vomited the first time he saw (not touched) playdoh. He has global developmental delays.
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Caitlin, 3 years old was also born with hypotonia. She also had tracheomalacia (her trachea would collapse and she would temporarily feel that she couldn’t get enough air). She was also born with torticollis and plagicephaly. The neurologist felt that she was so low tone in the womb that she couldn’t lift her head, so the muscle in her neck shortened causing her head to tilt to one side (torticollis) and her skull became flattened on one side (plagiocephaly). She started PT at 2 months old and with alot of hard work those two things were resolved. Caitlin recently started in a preschool disabled program that her brother attended last year. She receives ST, OT and PT to address her developmental delays. She wears orthotics and a special suit known as a benik vest and shorts to help her find her center of gravity. She had poor balance and would often flail her arms and legs while walking. She fell often. The benik suit is a compression garment and the idea is that it helps make her more aware of her body. We just have to be careful now that the warmer months are upon us that she only wear it in air condtioning. Cailtin had her work cut out for her when she came along. Aidan was extremely jealous and very attached to me and I could not leave them alone because he was aggressive. But no matter what he did she was so forgiving and nurturing of him. He used to refuse to show her the things he drew at school because she wanted to see them. But each day she would sit next to him when he opened his book bag and say “Aidan, it’s soo booootiful!” and ask to hang it up. She’s completely won him over and he is learning so much from her about sharing and friendship.
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Meet Nolan! Nolan was a happy and chubby baby when his doctor heard a heart murmur at his 6 month well-baby visit. His pediatrician didn’t expect there to be any problems, but sent us to a specialist just to be sure. We’re awful glad she did, because the cardiologist found Nolan had a coarctation of the aorta and bicuspid aortic valve. Two weeks later, he had surgery at the wonderful Children’s Hospital in Omaha, NE. He had a rough time for a few days post-op, but has been doing well since then! He will have to be seen by a cardiologist for the rest of his life, there is always a risk that his coarctation may reappear and it’ll have to be corrected again. His bicuspid valve is operating perfectly for now, but he will be monitored to make sure it continues to do so. He’s our little peanut; he has a hard time gaining weight. But he’s the toughest guy we know!
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Olivia Gabriella Bellini was born on March 2, 2009 has been through so much in just her first year of life. She was 8lbs 8oz, beautiful…perfect. By day 2 she started to show signs of an infection, by day 4 had an enlarged spleen and low platelets… more symptoms kept coming. We searched for 5 months meeting with various specialists to find an answer and finally near the end of August 2009 we were struck with devastating news. Olivia had neuronopathic Gauchers Disease. Since then Olivia has undergone weekly infusions, 4 surgeries that include life port placement, life port revision, G-tube/Nissen, and a tracheostomy. She has had 7 weeks of hospitalization, countless bloodtests, MRI. She is an inspiration to everyone who meets her!
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Evan was born at 36 weeks. He spent his first month in the NICU due to pulmonary hypertension and feeding issues. Since that time he has been very healthy with only one other 3 day hospital stay. He is a very active boy. He especially loves to play catch with his sister or play with his cars and trucks. Evan started preschool in April and loves interacting with the other children. We are extremely blessed to have Evan in our family. He has taught me that life is about the journey, not the destination.
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Ronnie was born by emergency c-section after his heart rate dropped to 80 and did not recover. His Apgar scores were 9, and through my morphine haze, I vaguely remember catching a glimpse of him wrapped in a white blanket, those dark blue eyes trying to gather all that was happening. Daddy went with a nurse to the nursery to get him all cleaned up and meet me in my room. Our family was complete, two girls, one boy, and everything was fabulous. That’s when everything changed. Ronnie was settled into the NICU in his new “digs” and his nurse spoke with us and was talking about how beautiful he was. We asked “so, then he made it there?” and she responded that he was there, he was bathed and he was stable. A cardiac team would round soon and discuss his condition, order labs and tests and contact us soon with their diagnosis. Ronnie was over an hour away from us, and in a different state. “Your son has interrupted aortic arch, aortic stenosis, and a good sized ventricular septal defect. Do you understand?” “No.” Thanks to internet searches, talks with family members in the medical field and my own sense of urgency in understanding my son and making the best decisions for him, I started to understand everything. All was fine until October when his feet started to turn so purple they nearly looked black. Ronnie had a cardiac cath on October 20th, and admitted after the results showed that he had outgrown his Sano shunt. On October 22nd he had a modified B-T shunt and he was home 5 days later. This time around we all did much better, and I even have some memories of that period in time. Now, Ronnie is growing, and smiling, and developing like a cardiac patient . . . slowly but surely, and he is my hero. His cardiac team has decided to do a Rastelli procedure on Ronnie when he is big enough, and we are all optimistic.
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Almost 2 years to the day of our wedding we welcomed our son, Quade Nathaniel (Oct. 8th, 2009). I had a very uneventful pregnancy and was surprised when at 3 1/2 weeks early I was in labor. Within mere hours of his miraculous birth we were told Quade has Down Syndrome. In the hours to follow there were many emotions from joy, to sorrow, to questioning our ability to handle a special needs child and then back to joy. I’ve come to realize since his birth that down syndrome does not define my son. We will not put boundaries on his abilities. So what if he has an extra chromosome. Quade is progressing very well developmentally. He has physical, speech and development therapy once every other week. He loves therapy and his therapists love him. He is a very happy baby and loves to giggle at his daddy. He had some minor heart issues at birth, but we were told not to worry and recently he has been diagnosed with low thyroid so he is on a pill a day.
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Courtney (2) and her sister, Katelyn (4), both have Spina Bifida. Courtney was adopted this past April from China, and Katelyn was adopted in June 2008. Both girls have been such a blessing to our family. They have so much spunk and beautiful personalities and have already overcome so many obstacles. We look forward to seeing how their lives continue to unfold!
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Our little Jacob is a 4 year old boy who loves all of the Disney Pixar films. He is such a hard worker- who has a lot on his plate! He was born at 32 weeks and diagnosed officially at 2 years old. He is not currently able to walk independently, but his walker gets him where he needs to go. He works hard in 4 hours of therapies each week as well as 3 therapies at preschool! I see such a perseverence in this boy. Despite being globally developmental delayed, he tries and tried again to achieve his goals!
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Zach was born 6 weeks early at 6 pounds 6ozs. At 3 months old we noticed that he was having issues eating and we started a rollercoaster ride. InAugust of 2009, we got the diganoses of MITO, it helped us understand what was going on in his body. However, it is hard. We know at any point he can land in the hospital, last year in 2009 we spent 60days in the hospital and so far has spent 14 days in the hospital in 2010. The one thing that I can say about Zach is that his demeener is WONDERFUL and his smile is amazing. He teaches me every day and I know now that each day is a gift!
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Calvin was born October 17 2003. When he was 6 months old Calvin caught a cold. We new something was wrong when after 3 months he was still coughing. And not just any cough, he was coughing so much he was gagging. Doctor after doctor said he was fine. Until he started loosing weight. We were sent to a pediatrician who was able to shed some light. He was tested for Cystic Fibrosis and just a few days after his first birthday he was diagnosed. Today Calvin is 6 years old and loving grade 1. Life is not all fun and games for Calvin though. He frequently gets colds that can last anywhere from a week to a month or more. He has missed 30 days of school so far this year. Calvin has to endure an hour of physio therapy every day (that he does not like doing!) and take upwards of 20 pills every day. Calvin sometimes has to do inhaled treatments. Every day is a struggle to keep his weight up and his body healthy. We hope that one day there will be a cure and Calvin can ! be a normal boy who doesn’t have to worry about enzymes every time he eats, or doing his daily physio. We know there will be many difficult times ahead of Calvin in his life and like to give him any chance we can to just love life and be happy.
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Meet Seamus! This little guy truly is the string that binds us as a family. He is simply a joy and a pleasure. He is adorned by his older brother and sister. He has mosaic down Syndrome which is a rare form of down syndrome. Every milestone is cause for celebration in our house. We celebrate a lot!
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Our daughter Tsz-yan is nine year old is always happy and is a Blessing.. She loves the color pink, especially if it has sparkles, the princess, Tinker bell being her favorite. She love everything girly and must have a butterfly wand to accompany her in her adventures. Tsz-yan was blessed with Down Syndrome which helps her see the world with Rainbow colored glasses. Everyone is her friend and is greated with a huge smile and Hello. Nothing usually slows her down until the last year , recently we found out the problem, she is having some trouble with her heart. This causes her to have shortness of breath, get blue and be very tired.Tsz-yan is an amazing little girl who brings a smile where ever she goes. She is an amazing Blessing.

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Sam was born at 34 weeks 1 day after it was determined that he had an enlarged bladder that was not emptying properly and he was not reactive in the womb. After two days he did not pass his first stool they did a contrast test which showed he was blocked. They gave him a few more days but when he did not pass his first stool so he was operated on. He was given an ileostomy at six days old and the diagnosis of MMIHS. We were uncertain if Sam would be able to eat at all because usually children with this disease have entire digestive systems affected. Sam was given his first taste of food at nine days old and miraculously his small intestines processed that food and he passed stool into his teeny ostomy bag. Sam’s bladder problems have been luckily very minor. He is a miracle! He still has his ileostomy at three years old and it is undetermined if he will ever be rid of it because his colon is so tiny. They will not give us a picture for his future because his syndrome is so rare and they have very few cases like him on the books. We just enjoy each day to the fullest and pray he continues with his great current health. Sam is tiny for his age but is finally now on the growth charts! Have I said what a miracle he is? He is truly my hero! He does have some development delays which are unrelated to his syndrome we believe.
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Our son Lance was born 7-14-2003 with hypoplastic right heart ventricle, ASD,VSD. At the age of 6 months he had his first open heart surgery. We then had a somewhat calm 5 years. We had doctors appointments but we lived a normal life. Then Dec 2008 Lance started getting sicker. We scheduled his second Heart surgery and he had this surgery in April 2009. After this surgery his heart function went down hill and his kidneys shut down. The doctors tried everything, but after 2 months it became apparent he needed a new heart. After we got over the shock he was listed ,and five days later received his miracle heart. He was in the hospital 3 months, and it was a very scary time for us all. He came home in August 2009 and he was still very weak, but with time and love he is know thriving. He does have a lifetime of care and statics say that there will be future transplants. We are staying optimistic and with prayer and medical research we focus on the positive. He is about to be 7 and is now playing baseball and a fearless base runner. We are so Thankful to the donor family that gave so many people a second chance.
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Emery Jane was born at 8:30pm on March 13, 2009. We were more than a little overwhelmed and scared when Emery’s pediatrician showed up around 10pm that night to look her over. The first few days, especially in the hospital, were a blur of tears and emotions. We found out the morning following her birth that Miss Emery does have a heart defect as well. We are aware now that 50% of kids with Down syndrome also have a heart condition of some kind. But, at the time, we felt alone in the world. We had no idea what our world as parents would hold. Emery’s heart is still strong; we have been able to avoid the operating room and extended stay at Children’s Hospital. She is closely monitored by her cardiologist, and for that we are thankful. Emery crawls around the house, especially to chase her kitties! Emery loves to sing “Itsy Bitsy Spider.” She signs “mom” and “dad” and “eat.” She gives kisses and high fives. And, wow, when Emery smiles the room lights up. Emery is a true blessing to our lives. She has taught me more in one year about love, patience, acceptance, and tolerance than I realized possible. She has touched the lives of so many people–immediate family, extended family, and even strangers. We can’t imagine our lives without her, and all the fear we felt at the beginning has been replaced with unimaginable joy.
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Caitlin was born Dec. 7, 2007. She was born with a Hepatic Hemangioma, which caused her liver to fail. She spent many, many months in the ICU fighting for her life. Caitlin received her “Gift of Life” May 6, 2008. With her new liver Caitlin is doing well, she has battled a few rejection episodes and is more prone to sickness due to being immune supressed(she needs to be on life long immuno-suppressants to keep her body from rejecting her new liver.)But, she is a fighter and is the happiest little girl you ever did meet. We love her dearly!

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Meet beautiful Ella! Ella was born 7/8/09. 4 days after birth she was diagnosed with Pulmonary Atresia with IVS. She had a heart cath at 5 days old and Open heart surgery at 12 days old. She is now 10 months old and doing well! She will need more surgery possibly late this year early next to repair her broken heart. Ella is cheeky and perfect with a perfect broken heart! My beautiful Little Girl is the light of our lives!

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Olivia is a beautiful sassy little girl with a myriad of disorders and diagnosis’. You would never know it with the way she handles herself. One of her biggest hurdles to date has been being unable to eat anything more than a diet consisting almost entirely of medical grade formula. Olivia has had troubles since she was a tiny baby. She eats an Elemental formula now and has bloody stools if she ingests anything else. She has a great attitude and is a beautiful little girl and we love her. She does therapy 5+ times per week. Because of Olivia’s hurdles her speech is very delayed. But even with all she goes through, she is one of the happiest kids you will ever meet! We are thankful for all of the doctors and therapists that are working with Olivia to better her life and continue to keep her smiling and happy!

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Adia was born with Down Syndrome and a heart defect. She had open heart surgery to repair a large VSD and two small ASDs when she was 4 months old and weighed only 7 pounds.The surgery was successful and she is now two years old and soo amazing! Adia also has an older brother, 17 yr.old Sidney. Sidney was diagnosed July 6,2009 with Burketts Lymphoma. He had a large tumor wrapped around his small intestine and by the time he was diagnosed he had stage four cancer. Sidney just completed six months of agressive chemotherapy. The majority of that six months was spent in the pediatric intensive care unit. His prognosis is wonderful and the doctors expect him to carry on with his life cancer free.

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Daisy was born on February 16th, 2009 as a chubby, healthy baby. She brought so much love and happiness into our little family: dad Scott, mom Anne, and big brother Ezra. She was developing normally until 5 or 6 months when we noticed she wasn’t meeting all of her developmental milestones. She visited with her pediatrician when she was 7 months because she was not sitting up by herself. Daisy was given the initial diagnosis of benign congenital hypotonia, and sent to physical therapy to improve her muscle tone and strength. Her physical therapist was concerned it was something more than just hypotonia, so we visited a pediatric neurologist. After monitoring Daisy for several months, the doctor diagnosed her with cerebral palsy. Scott and I didn’t think it was cerebral palsy – there was something else. We just wanted the correct diagnosis. We don’t blame the doctors at all: they did the best they could do with the information !
they were given about Daisy’s condition. We went to two more specialists, ran some blood tests, and discovered that Daisy has Tay Sach’s disease. Unfortunately, there is no cure for Tay Sachs disease. Daisy cannot sit on her own. Daisy is now blind, and eventually will become deaf as well. As the disease progresses, Daisy will lose the ability to move her muscles, the ability to swallow, and the ability to breathe. Daisy has not, however, lost the ability to love. All she wants is to be loved, kissed, and hugged. She is just a gift, and we are so blessed to have her in our family!
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Meet the amazing Mr. Cooper! Cooper has been through so much in the last year and a half. Born without any complications and having been healthy the first year of his life, things started going wrong around 14 months. At that time Cooper lost the ability to swallow and developed respiratory problems. Within a few months he underwent a Nissen Fundoplication surgery and had to have a gtube (feeding tube) put in. Numerous other diagnosis followed and it was demonstrated that he has a progressive neuromuscular disorder – most likley a metabolic/mitochondrial myopathy. We also found out he had a chiari malformation and this past November, underwent a long brain surgery to repair that and some other malformations. Cooper currently struggles with dysphagia, respiratory failure, metabolic issues, hypotonia, vision problems, and seizures amongst other issues related to his condition.

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Jake is amazing. Dx shortly after birth with CF, he developed a fever when he was 2 weeks old. After admission to CHOP, he was dx with biliary atresia. he underwent a Kassai operation and spent his first two months of his life in the hospital. At somepoint, jake will need a liver transplant. He also developed life threatening food allergies. Life is wonderful for this very special boy. He tells us “don’t aske me how school was today – because it is great every day!” That is how jake views life. Everyday is wonderful! He is an amazing boy with two wonderful older siblings, Christian (16) and Alex (19). Christian also has Cystic Fibrosis. Although we would love for our children to be completely healthy, they are our heroes. Thru their illnesses they teach us everyday the true meaning of life!

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Meet Nathan Starr! This little hero was born on Valentines day 2009. At 2 months he was diagnosed with a very large mid-line arachnoid brain cyst which has caused agenesis of corpus callosum and hydrocephalus. He has had 2 brain surgeries one at 2 months and the other at 4 months. We are hopeful that there will not be anymore. Nathan is an awesome kid and we hope the best for his future which is uncertain. Despite all odds Nathan lives life happily like any other little boy!

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Kayla is a beautiful energetic 6 year old who was born with a rare syndrome which exposes her to multiple forms of cancer for the rest of her life. She has already survived a double cancerous brain tumor with many after effects including hearing loss, nuerological problems, brittle bones and severe skin cancer over her body. She lives with her disabled grandmother who has legal custody of her. They are each others support and live life to it’s fullest everyday!

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Lucas Boucher was born to wondeful parent who were not able to give him the care he needed. so when he was 7 months old and only 8lbs, they decided to give him up for adoption to a family do didnt have children of their own. Since then Lucas has been on a roller coaster ride. In and out of the hospital for different surgeries and procedures. he’s developmentally delayed, severe sleep apnea, Reactive Airway, but for some reason has genetics stumped on his specific diagnosis. nevertheless, he is such a happy 3 (almost 4) year old boy, who welcomed a little bother in to the family in 2008.

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Before Doug was born, we knew he was special. He was diagnosed with congenital heart disease when he was only 22 weeks old. When he was born, we found out he had many more issues. He had open heart surgery when he was only 6 days old. Afer his surgery, we found out that his intestines were malrotated, so he had surgery to repair them, and a G-tube placed. He also had surgery to allow him to breathe through his nose. He was diagnosed with Noonan Syndrome. After spending 57 days in the NICU, he came home. He has spent the first year of his life fighting and learning how to be a baby. He bravely faced his second open heart surgery at 12 months old. He is now growing into a feisty toddler. He still has many challenges to overcome, but he is a fighter and will make it through.

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Meet Anna Banana Pants! Anna was diagnosed with Down syndrome shortly after she was born. She has some developmental delays, but is working hard in therapy to continue to progress, learn, and meet milestones. We have learned that it does not matter when she meets her milestones, only that she continues to meet them. In her first 2 years of life, Anna has struggled with croup and pneumonia during the winter months, and has been admitted to the hospital on more than one occasion for treatments. She has also had eye surgery twice, and will most likely need it again in a couple of months. But, none of that matters because Anna is the sweetest, happiest, most content little girl you will ever meet. She lights up the room with her smile, and warms your heart with her hugs. She radiates innocence and love. Each day, Anna reminds us how great our God is!

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When Oisin was 6months old he was diagnosed with an extremely rare cranial nerve disorder (only 8 world wide). This cruel and unfortunate affliction has resulted in Oisin losing 75% of his eyesight by the time he was 9 months old. Unfortunately he is also deaf. When he was about 7 months old he underwent an extremely devastating operation which involved both his eye lids being sewn together in an attempt to reduce the risk of further damage to his corneas. Oisin was born a delightful child, with the most endearing, loving personality. He never grumbles or moans about his condition, he humbly accepts that it is to be. He is kind and considerate and is now a very proud big brother to Zac, a much longed for sibling! Oisin has to miss out on so much in life because of his condition and life often revolves around lengthy trips to the hospital.His photo shoot meant so much to Oisin! A chance for him to shine like the star that he is!

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April will be 6 this month and was diagnosed with her rare Chromosone Disorder in January 2005 at 9 months, to be very briefly summarise our story, we had no idea that anything was wrong with April until July 2004 when she was a few months old our GP noticed that she was not fixating on objects this then rollercoastered into seeing many many professionals and a stay at the Royal Victoria Childrens Hospital – Belfast for many assessments and rigourous tests after which a diagnosis was then made. April then 2 years later was diagnosed with Autism yet another devastating blow to us her family. Due to her disorder being so rare we had and have no idea what the future holds for April. April receives regular Physiotherapy, Occupational Therapy and Speech and Language Therapy and attends a local Special School called Rathore in Newry which she loves. April has no speech and still walks with a gait and is fully dependent on us for all her needs. April is a beautiful, content wee girl who we could not live without.

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We adopted our beautiful son, Evan, from Bulgaria when he was 3 1/2 years old and quickly realized he was “special” with Autism. After 13 years of tough therapy, schooling and love, he is becoming an amazing young man that we would love to celebrate. He is a hero in every sense of the word when you see where he came from to who he is today.

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Isabelle (or Dolly as she is known to family and friends) was born 14 weeks prematurely. She spent 2 months in Wellington NICU, and one month in a maturnity ward in Blenheim. At 5 days old Dolly was diagnosed with a grade iv bleed, then a at two weeks old we were told she had hydrocephalus. At 3 weeks old she had brain surgery to insert a resevoir to enable the neurosurgeon to withdraw fluid from her brain. While in hospital she underwent numerous procedures including blood transfusions, brain scans, heart scans and no end of blood tests but would not complain. Two months ago she had her PDA closed and is going from strength to strength. She has gone through too much for one little girl, I wished that I could swap places with her. But now she is the happiest little girl you will meet, and a complete show off! She is our miracle.

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Allie was born with a complex congential heart defect. Within 2 hours of being born, Allie was wisked off for her Norwood stage 1 surgery to correct the problem. When we finally got to see her in the PICU, it was heartbreaking to see her connected to all sorts of wires and monitors… but what a fighter she is! It took 22 days, but she was finally released and cleared to go home. There have been quite a few bumps in the road to wellness, including several visits to the cath lab, another heart surgery (the Glenn procedure), and an untold number of blood draws, but Allie has surprised us with her strength and unfaltering spirit through all of this. Allie is approaching 9 months old now. She flirts with her daddy. She loves her big sister. She takes comfort in her mommy’s arms. Allie’s smile is so bright and vibrant; everything about her looks and actions appear the way they should–it’s hard to believe she has a broken heart. But she’s strong and has no plans to give up. She has some more battles to win!

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Meet Peyton! He is a happy 19 month old little boy who has CP that has affected his right side he dosen’t let that slow him down much he works around it. Its amazing watching him play and interact with other kids that don’t have CP most people would say hes 100 % normal but once you get to know him you see him struggle and act differently then most children. But hes ok with it and so are we! No matter what he faces, he is always a hero in our eyes. He does the best he can, with what he can and we cannot ask for more. He is a typical boy that just happens to be ‘special’! he LOVES Thomas the train and enjoys eating grapes!

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For the first 4 years of her life, Tatyanna was just like any other little girl. She loved dancing, Disney movies and was crazy about horses. She had more energy than we knew what to do with! Shortly after her 4th birthday we noticed that our once active child was becoming increasingly clumsy and would frequently trip and fall. We became concerned that perhaps she was having seizures and began what became a lengthy diagnostic ordeal. What started as a few “drop seizures” a day turned into many more of differing types and severity. One week before her 5th birthday, Tatyanna was diagnosed with Late Infantile Batten Disease, a degenerative neurological condition. Over the last 2 years her condition has deteriorated but her spirit has not diminished. Tatyanna continues to inspire those around her with her courage and smile that can light up the darkest room. We know that the road ahead is not easy but we will continue to fight for our brave little girl.
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Jordan seemed to be a healthy baby until she turned 4 months old. She started to develop some chest problems and after being hospitalised twice she was diagnosed with Asthma. It wasn’t long before the doctors realised that Jordan’s asthma was very difficult to control. They then diagnosed her with Brittle Asthma. She continues to have asthma flare ups on a regular basis with chronic chest infections. Jordan struggles with the symptoms of both complaints. School life for Jordan is so difficult. She hates missing school and finds it hard to rebuild friendships after a period of illness. She is always trying to catch up on missed school work. This last year has been really bad for Jordan. She now attends a Specialist in Respiratory Medicine and is trying new medications to gain control of the asthma. She suffers regular chest infections which can require aggressive antibiotic and steroid treatment. Jordan is my little hero, because she wears a smile on her face every single day. She never complains about taking medications and she never ever lets the illness win. She fights through every flare up, Jordan appreciates every breath she takes!!!

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Emily and Abigail were diagnosed with Autism Disorder in March of 2009. Since their diagnosis, Emily has fought hard and come a long, long way. Abigail has fought just as hard, but has a long hard road ahead of her. At 3 and a half years old, Emily is learning to play with other children and is really starting to talk up a storm. Abigail is still non-verbal, but is really coming along with her eye contact and affection. Both girls are inspirations to all that meet and get to know them!

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David is a happy and charming little boy. He loves people and brings joy to all those who know him.
Prader-Willi syndrome is rare (1 in 15,000 births). PWS results in a malfunction of the hypothalamus in the brain. This causes an insatiable appetite (his tummy never experiences the sensation of being full, even after eating a huge amount of food). People/children with PWS have hypherphagia which is a strong biochemical urge to eat all the time. If not supervised constantly, those with PWS can literally eat until their stomach bursts. They can die or become very obese in a short time. Along with these things, PWS also causes low muscle tone throughout the entire body leading to delays in walking, talking and much more. They require extensive physical therapy, occupational therapy, speech therapy, and special education. The costs to the family or substantial, but the therapies are worth the benefits.

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In 2002 a baby boy enters the world with a scream like no other. His early years were loud, confusing, tiring and fraught with questions about his physical, mental, and emotional health. After 4+ years of searching for answers, we heard the word autism. Hayden had a reason for not understanding language in a typical way. We now knew why we couldn’t go to the store without a meltdown as we passed the toy train department. We found out that he didn’t play well with other kids because he didn’t know how to play. A year later the screaming started to decrease and his language improved. We spent a good deal of our lives at doctors and therapists, of all kinds, trying to create the best life for him. As we worked through all of his health problems and maneuvering through the complexities of autism we started to see more and more successes. Hayden is the hardest working kid I have ever met. He has worked almost every day of his life trying to overcome his deficits. Even when he is tired he pushes forward. He is a hero. This year he attends a typical public school and is fully included in his classroom. Most people will never know how hard our journey has been because he is such a loving and communicative child now
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My name is Marco.I am 3 years old and almost turning 4.My life is not easy.I was born with critical aortic stenosis.Doctors found out about my heart defect only few hours after my birth.When I was only 9 hours old they transfered me to one of the best kids hospital in the world.I was so sick that doctors where not sure if I would make that transfer.And this hospital was only cross the street.But I did.After one month being on full life support and fighting for my little life,doctors told me that my only chance to survive is heart transplant. After 4 days on transplant list my gift of life was given to me,giving me a second chance to live. After 12 days post heart transplant I could go home.My first year after transplant was amazing but after that,I went through a lots of ups and downs.I was hospitalized many times.I had ng tube put in in september 2008,changed it to g tube in january 2009 and still has it.It’s not fun at all.I went through a lots of scans,biopsies,blood work once a month sometimes more often,scopes and so on.The most recent and major thing that happened to me in december 2009 was an emergency surgery for my bowel.During my colonoscopy I stopped breathing,had CPR for 12 minutes,had a surgery and end up with colostomy for now.Hopefully I will gain fast and doctors will close that up.So this is me.I am really thanksfull to my donor and my parents.

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Carter is the youngest sibling out of three. By the age of two, Carter’s parent’s noticed his lack of speech and limited communication. Carter also did not point or give many social smiles. Through in home therapy sessions Carter did gain some words and even speaks in 2 word sentences. However just before his third birthday, Carter was officially diagnosed with PDD-NOS which is on the autism spectrum. He has just began a special pre-school class for children with special needs and seems to really enjoy it. We have high hopes for Carter but we know that the things most kids learn easily will not be as easy for him.

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My son Daniel was born at 34 weeks at Westchester Medical Center. He stayed in the NICU for one week to work on his breathing, sucking and swallowing. He was also under weight. We started Early Intervention at three months because of very low muscle tone. We gradually began incorporating occupational therapy, speech therapy and special education because he was not meeting his milestones. At 18 months, he was diagnosed with GDD and at 23 months he was diagnosed with autism. Even with all Daniel faces, he smile rarely leaves his face!

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On April 28 2009 my beautiful daughter Fiona Grace was born. The delivery was difficult and she went into distress and when her heart rate hit 68 I was rushed into the OR. The next day as I held my perfect baby girl I thought that we were out of the woods. At 2:30pm they came and took her from my arms in the middle of feeding her so that she could get an echo since she had a heart murmur and they wanted to be on the safe side. Then I waited freaking out for the pediatric cardiology team to arrive. When they came in they brought me a picture of Fiona’s heart and a normal heart and slowly went through a laundry list of CHDs: a severe CoA w/a hypoplastic arch, PDA, BAV, PFO, small left vent. Then the NICU doctor came in and she told me that Fiona was being stabilized and that she would need heart surgery sometime in the next 2 wks, but that it wouldn’t be today or tomorrow. he has also battled with severe constipation and had reflux. Despite her slow gain and feeding problems in the beginning she is following her own growth curve and was 17lb 2oz at 9 months old. Her PHT is finally under control and we were able to wean her from her last med, Sildenafil about 1 month ago (hoping that we can stay that way). Even though we know that she will need at least 1 more heart surgery we just try to focus on taking each day as it comes. I am simply amazed by everything that she does, she crawls, cruises, gives kisses, and says hi. She is my hero and I am so blessed that I was chosen to be the mom of such an incredibly strong little girl.

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My name is Dominic and I am living with Cerebral Palsy. I was born March 29, 2006 in Las Vegas, Nevada. I am my mommy’s miracle baby! I was born by emergency c-section 2 months early. I came into the world weighing 3 lbs. 12 oz. and was 16 1/2 inches long. A little guy to say the least. But my heart is as big as the sea. I spent my first 3 weeks away from my mom in the NICU at Sunrise Children’s Hospital. I was born a fighter and continue to fight every day! I finally got to go home the day after my mom’s 35th birthday. I was a good baby, although I was never a good sleeper. My mommy says that by the time I was about 3 months old, I wasn’t holding my head up, hated being on my tummy, and couldn’t roll over. But my doctor wasn’t to concerned. He said that babies develop at different rates, and just to give me a little more time. In October of 2007, at 18 months old, I saw a neurologist to see what was wrong with me. My Aunt Linda, who is a P.E. teacher, has lots of experience working with kids with Special Needs. She said she was sure that I had something called Cerebral Palsy. Cerebral Palsy, or CP, is a brain injury that is caused by lack of oxygen in utero, during delivery or shortly after birth. It is a disability that affects my muscle movement and coordination, speech, and swallowing and eating. d someone somewhere to help me help myself, I believe my life can be better, easier, and happier. I am working so hard to get there. I just really need a helping hand. I know that I’m worth it.

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Meet Dakin!! Dakin is a very strong little guy fighting SMARD. What is SMARD? Spinal Muscular Atrophy with Respiratory Distress (SMARD) is part of the Spinal Muscular Atrophy family of disease. It is a motor neuron disease, meaning there is progressive destruction of cells that control motor function, such as breathing and speaking. Cognitive function is unaffected. Like all motor neuron disease, there is no cure. It is an autosomal recessive disease, meaning in theory both my husband and I carry the mutations that cause SMARD (this is as yet to be determined–we still need to be tested). Testing is done through bloodwork and was, until very recently, unavailable in the United States. Dakin’s work was sent to England. Initial testing took 3 months and the final, definitive test was not completed until a YEAR after the blood was submitted, though his is a less usual case–he has two different mutations. Even with everything Dakin has been through, you cannot keep the smile from his face! His courage truly is amazing!

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At 18 months old Ollie was diagnosed with a Chronic Kidney disease called Nephrotic Syndrome ….. we basically spent the next 12 months in and out of hospital trying to get Ollie well He was so bloated with fluid and ended up with many other complications as a result of his kidney problem. It was one hell of a year and a roller coaster ride I would sooner forget. Ollie is still on a lot of very “heavy” immunosuppresive drugs to help fight this disease but we are basking in the joy of “remission” for the last 10 months now. What the future holds, who knows as there is currently no cure for this disease. We live each day and make the most of it! He is a very happy typical 3 1/2 yr old boy who also happens to be a hero!

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Arayah was born March 26, 2009 with Hypo Plastic Left Heart Complex and Shone’s Syndrome. Also, they believe she may has Turner’s Syndrome too. Arayah had her first open heart surgery (OHS) at 6days old on April 1, 2009, Then at 2 1/2 months old Arayah was hospitalized for poor feds due to the fact that she couldn’t breath when she ate. So at 3 months old she had her first heart cath to re-open her ASD. Then at 6 months old Arayah got RSV and was again hospitalized. At 7 months old Arayah had her 2nd OHS to correct what they could of her heart defects. And at 10 months old Arayah started having trouble breathing due to a narrowing of her trachea so again she was in the hospital. Now on March 11 she will have surgery to try and fix the narrowing in her Trachea and they will be putting tubes in her ears to help her hear better and to combat the ear infections. This will be her 4th surgery and and 7th stay in the hospital.

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Our son Zachary was only 2 ½ years old when he was diagnosed with Leukemia on 3/23/07. He underwent extensive treatment of chemotherapy, radiation and steroids for two years. On 1/06/10 he had a relapse of his leukemia after being off treatment for only 7 months. Zachary has been at Childrens Hospital Boston since that time receiving aggressive treatment to get his body back into remission and in preparation for a bone marrow transplant anticipated in early April. Zachary is an energetic boy who enjoys school, is very outgoing and loved by everyone, has a yonger brother named Liam (age 3), his favorite color is red, went on his Make A Wish trip to Hawaii and wants to be a chef!
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Meet Aidan! Aidan is a very strong boy who is fighting Shwachman Diamond Syndrome, Adrenal Insufficiency, Pancreatic Insufficiency, etc. Aidan’s prognosis is unknown at this time because of the complexity of his multiple medical issues. Aidan is doing fairly well right now, but injury or illness could put Aidan’s life at immediate risk. Shwachman Diamond Syndrome also has a high probability of causing certain types of leukemia, so his prognosis also depends on whether his bone marrow failure develops into leukemia. Even with everything Aidan has to go through he still comes through with a smile on his face. He reminds everyone he meets what being strong really means!

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Our precious little baby was firstly diagnosed with Talipes when he was born. This wasn’t a major issue as it was easily repaired. Aswell as Talipes, Ali was a few months later diagnosed with Ptosis, which is also not a major issue but will be fixed before he attends school. On a routine visit to the pediatrician at 6months old , the Doctor noticed that Ali had a heart murmur, then after a few tests, he was diagnosed with Tetrology of Fallot (TOF) meaning he had four things wrong with his heart. Ali had open heart surgery at 8months old, and although things went well, he is still being monitored closely as future surgeries could become possible due to Pulmonary valve stenosis . At present he is back to being the bubbly, beautiful baby boy he has always been, and doesn’t look like slowing down any time soon. We are so blessed to have such talented Doctors.

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Savanna​h came into the world screaming. Daddy thought there might have been garage doors opening in nearby neighborhoo​ds by the shrill screams that came from this little body. Things soon settled down but only for a short time. After getting Savannah to the nursery to have her checked out and get her vitals, we discovered that things were not going to go quite as smoothly as we had planned. Once they got her in the NICU, it seemed that everything started to come apart for us. They began to find things that concerned the doctors. Over the course of the next 31 days, we were on a roller coaster of emotions as we were told of the various things that Savannah was having trouble with. We found that she had more heart issues such as a bicuspid aortic valve (a lot of people have this and are not aware), Atrial Septal Defect (ASD, a hole between the two upper chambers), Ventrical Septal Defect (VSD, a hold between the two lower chambers), pulmonary stenosis (a narrowing of the valve from the right ventricle to the pulmonary artery to the lungs). Savannah has had many hospitalizations for things such as RSV, pneumonia, respiratory distress, among many others. She had a colostomy for 3 months in 2008 – half of her large intestine was removed. She had a trach placed in March 2008 and had it removed September 2009. Savannah started pre-school last September at Gateway Education Center – a school for children with special needs. She is doing well and loving school. She also loves playing with her little sister, Morgan, who is 18 months old.

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Our daughter, AnnaLee, was dignosed at our 20 week ultrasound with a cleft lip and cleft palate. She will have to undergo numerous surgeries as an infant to repair her lip and when she is 5 years old, she will undergo the surgeries to repair the cleft palate. Since the cleft is in her hard palate, they will have to do a bone graft. This will also cause her to have a lot of problems with her teeth and appearance for many, many years to come. Oral surgeries and a small nose reconstruction surgery will also be a part of her future. She has so many challenges to face with hearing/ear infections, poor sucking reflex, acid reflux, and getting too much air through the clefts causing stomach problems and a lot of pain for her. The biggest struggle for her and us is feeding and trying to get her to suck with special bottles. As of right now, tests show there are no other genetic disorders, but further testing will be done later to check developmental milestones. We are blessed that this is something that over time can be fixed, but she has a long, hard road ahead of her (physically and emotionally). People can be so cruel about facial deformaties, but God has made her special for a reason, so I hope that through or faith and love she can be an inspiration to others who face this disorder.

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Meet Riley. She was born December 30, 2008 with a severe CHD. We had no idea until she was born blue and lifeless. She was diagnosed with Transposition of the Great Arteries. Riley was taken to a local Children’s Hospital for her first surgery at 8 hours old. 3 days later we flew to Washington, DC for open heart surgery. The hardest part was handing her to the surgeon praying for the best outcome but knowing there is a great possibility that the worst could happen. I can say nothing, can prepare you for seeing your child after surgery. Each cardiology visit, every 6 months, we get off some meds and one day there will be other procedures but when that time comes, I can handle it because she has taught me how to have faith. By the grace of God, I get to wake up everyday with my daughter. Her journey has just begun and will be an issue all her life. and I cherish each day I have with her because who knows what the next day brings. Riley has taught me about adversity, strength, and love. My faith has grown and that smile she has can melt your heart. She may know what happened at 5 days old, but she is God’s angel on earth and I wouldn’t change it for the world!

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Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children’s Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah’s brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devistating news. Noah had suffered “global devistation” to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. Noah’s miracle has brought our story to all of you.

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Meet Joshua. At 18 months he was diagnosed with mild cerebral palsy, but his specialists feel there is more to the picture (or perhaps another diagnosis altogether). His MRI, in short terms, shows what a much younger child’s brain should look like, and “they” do not know why yet. He struggles with eating and movement, but has recently begun to obtain a lot of words. He attends physical therapy, feeding therapy, occupational therapy and speech therapy weekly. In addition to that, we have many doctors appointments to keep up with his care and search for answers. Any sense of “normal” is gone, but it is OUR normal, and we do our best. Joshua is a very happy little boy.

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I am Kamdon Boe Faudree and I was diagnosed with Hypoplastic Left Heart Syndrome. I have had two heart surgeries, The Norwood and The Glenn. I am scheduled for the Fontan on March 12, 2010. I am pretty strong and big too. The doctor says I am a good candidate for the Fontan so I’m not worried. I have a lot of friends that have already done this I can turn to, after all 1 in 100 kids are born with a CHD. But I pray with my mommy and daddy all the time, and thank the Lord above for my life. A lot of my friends don’t live to see there first birthday, and I’m getting ready to have my third?!?!? If you know a baby with a CHD, tell them about me and that they aren’t the only one around. Be brave and believe, thats all we can do! : )

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Meet Breezy, she has Cystic Fibrosis (a genetic disease that is manageable yet unpredictable) . The average life expectance for a CF patient is only 37 years old. I hope that Breezy will live much longer but the thought of losing her at anytime is always looming in the back of my mind. I believe The Littlest Heroes Project is doing wonderful things for families who have above average daily struggles. Care giving for your child who has an illness is a burden on a parent’s heart. Seeing a child suffer is a hard thing to deal with. The LHP is helping ease that burden even if only for an hour they are giving families and children a moment to stop and just appreciate life. And even better capture that moment forever.

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Meet Taylor. Taylor was diagnosed in Sept 2006 with Osteosarcoma in her right humerous. She was 11 yrs old. She had ten months of chemo, major reconstruction, a g-tube placed, biopsy, more weeks spent in the hospital than out during that time. All her chemo was in patient, she had many units of blood and platelets during treatment, lost 17 pounds during that time. Taylor is 14 and in the 9th grade. Because of all the chemo treatment and low counts/ flu season, etc, Taylor has been on homebound school for 8th and 9th grades. Our prayer daily is that this will be the treatment to keep her cancer free. We Pray daily for an Earthly healing for Taylor from this horrible disease that has taken up so much of her young life. We are faithful in her treatment and Earthly healing. We have watched so many sweet young friends loose their battle and gain their healing, only in Heaven. We spend as much time as possible trying to make sure that as many people as possible know about Childhood cancer and the need for a cure.

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Our son Kayden was diganosed at our 20 week ultrasound with a rare and complex Congential group of Heart Defects called Right Aterial Isomerism. He came into our word at 9:03am Feburary 2/09 by emergancy c-section. It was the happiest and scariest day of my life! After 18 days in the hospital, 1 scheduled surgery that was cancelled, 1 heart chatherization scheduled to place a stent in a narrow vein cancelled we took our beautiful baby boy home. To look at our son today you would never know he has heart problem and you would never know he once was give 2 months to live. He is a happy and active little boy always smiling. His 1st birthday is comming up soon and somedays we did not think he would reach this milestone but my little hero has. Kayden will always be my little hero and has gone through a lot in his short life and has gone through it like a champ. We will always treasure the photos we recived and appericate the session so much. I am sure when Kayden is older and knows all about this he will appericate it to.

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Trip was born 4 weeks early in April 2008. He had unexpected complications and came out not breathing and was sent to NICU, after a rocky NICU ride we got him home. He is now 21 months old and suffers from Reactive Airway Disease, Seizures, Eosinophilic Esophagitis, he has also been considered Failure to Thrive, and suffers from Developmental Delays. He attends Occupational Therapy for Sensory Problems, and attends a school 5 days a week for Autistic and At Risk Autistic Children where he receives one on one therapy, at home therapy, group interaction, speech therapy, and occupational care. He has come so far in the last 4 months and we definitely know he is a miracle to us and can overcome anything!!

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I am Noah – a fun, loving, sweet 3 year old boy getting ready for my 4th B-Day in January, 2010. My journey of doctors, MRIs, exams and therapies has been pretty intense, but with each visit my family and I have something more to be thankful for. I wore a helmet to reshape my head, hand splints for my thumbs, braces for my feet, and have endured endless needles for testing. I have also gone from visiting the doctors once every three months to once a year. I currently participate in speech, physical, sign, and occupational therapy. Although I cannot talk to you using my voiced words regularly, I can communcate by using signs and I am becoming quite versed in sign langauge. Our sons bring joy each and every day and Noah thrills us in all that he does and tries. He is so innocent and happy and keeps our hopes high with all that he will do one day! We truly learn something new each day and are so very blessed to have Noah in our lives. We know that one day we will all be angels with God, but for now, we have our very own little angel with us each and every day!

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Jozlynn was born with major congenital heart defects, hypoplastic right heart syndrome. She only had a single ventricle as well as missing two of her valves(basically half a heart). Needless to say her fight for life started on the very day she was born. She had open heart surgery when she was only 2 days old with a very small chance that she would make it through. Jozlynn is now 5 years old. She has endured hundreds of needles, tubes, wires, and machines. She has spent countless hours fighting for life in the ICU. She has been through 5 heart surgeries, as well as many other surgeries and procedures. We are glad to say that Jozlynn is now a very happy, active little girl. She can light up a room and capture everyone’s attention by her amazing, sweet personality. She loves to go swimming and go to preschool. She can just about keep up with all of the other kids. In fact, most people can’t even tell there was ever anything wrong with her unless they see her scars. If you ask Jozlynn about her heart surgeries, she’ll tell you that the doctor got to see her heart and said she has the most beautiful heart he has ever seen! She still has a long road ahead of her with more surgeries, infusions, tests, etc., but we are thankful for every moment we have with our little hero.

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This is Shea. Shea was diagnosed with Hodgkin’s Lymphoma, a blood cancer, in August 2008, just days before her first day of high school. She spent the first half of her freshman year undergoing five rounds of chemotherapy and three weeks of radiation. Ordinarily, Hodgkin’s is highly curable, but in Shea’s case, achieving remission proved difficult. She began showing symptoms again in May and was found to have relapsed in June, 2009. Since that time, she has had three different chemo regiments, some as an inpatient, some as an outpatient. It is hoped that an eventual dual stem cell transplant will eradicate her disease once and for all. In the meantime, Shea makes the most of her free time between treatments, attending school, hanging out with friends, seeing movies, and enjoying music and video games, much like any normal teenager!

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This is Sean. He is 9 years old and has austism. Sean’s challenges started early but we didn’t recognize them as signs of autism. He was adopted from Korea at age 4 months and we thought we were seeing signs of an expected delay in development due to all the changes that had happened to him in such a short amount of time. By 6 months of age he wasn’t responding to his name or our voices. He looked down most of the time and many people believed that he might have hearing problems. Despite years of therapies and medical treatment, Sean can not speak now. He does not use sign language or pictures with any consistency or efficiency. He is totally dependent upon others to figure out what he needs. His life has been very hard and frustrating yet he has been and continues to be a very sweet, gentle boy. He loves and shows it the best he can. He will never live on his own, never have friends or family as most of us know them. But he is my son and I love him with all my heart and always will. His brother and I are proud that he is ours.’

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In 2006 we found out we had been exposed to carbon monoxide as our flue had not been connected correctly, this was fixed but unfortunately not properly and in May 2009 our carbon monoxide detector went off and we found out we had been poisoned continuously for 6 years – during this time I had been pregnant and had Ellie (who is now 2). Consequently all of us as a family have had starvation of oxygen to our major organs including the brain and now have significant brain damage. As Josh and Ellies brains are still developing we wont know the full extent of the damage until they are 18 and every year they need assessing to see how their brains are developing and if they have deteriorated. Carbon monoxide poisoning affects the short term memory, concentration and retaining information – all things needed for education and life – Josh cannot learn new things as his memory doesnt register the information, on top of this he has dyspraxia which just accentuates the problem further. He has lost a third of his intellectual capacity through the poisoning which has caused self esteem issues. The poisoning has also affected our sleep patterns and for the past 18 months bedtime has been midnight for us all as the wiring of our brains is different now. Carbon Monoxide poisoning affects moods, personality, behaviour, social skills which we all have to try to deal with on a daily basis – life has changed dramatically and every day is a challenge, we have no idea what the future holds – but I thank God that we are all still alive x Josh and Ellie are truly heroes.

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Say Hello to Hayden! He is 3 years old and has Angelman Syndrome. Hayden likes to smile and puts everything in his mouth. Active little guy but unable to stand on his own and does a commando crawl to get around. Hayden likes new toys, shiny things, fans blowing on his face. Hayden can sit up on his own well. He likes to interact with people, but is easily distracted. He doesn’t give prolonged eye contact usually. I think he will be interested in just being in a new place, but we will try to bring some stuf he may respond to as well. He loves to be thrown around as well. Even with all of his challenges and restrictions Hayden is more then happy to live life to it’s fullest!

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Below are some of heroes we met in 2009

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This is Emily Lauren Archon. She came into this world the same way she loves to live. Unscripted and with flair. We scheduled a cesarean section, but she had another idea and came one day early. So much for planning. We looked her over from head to toe and decided that she looked perfect! The pediatrician came in the next day and told us that he saw several indicators that she had Down syndrome. It was heart wrenching to hear those six words, “your daughter may have Down syndrome”. She has touched so many lives and proven so many people wrong. Emily was born with a significant VSD and due to her small size, the doctors felt it was the reason she failed to grow and even suggested that she may need open heart surgery. She has never had the surgery and continues to improve in spite of it. Emily is petite, but her love is endless. Her compassion and caring immense. She may be 5 ½ years old and weigh a mere 29lbs, but she is large in so many other ways. Emily’s laughter is music to our ears. She brings smiles to our faces and joy to our hearts. She breaks barriers at every opportunity. She is our hero.

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Hi, my name is Olivia.  I am one year old and I have Cystic Fibrosis.  I spent my first 12 days in NICU for a meconium ileus which was able to be corrected without surgery.  I was diagnosed at one month after a sweat test.  I meet with my CF Care Team once a month to keep me wonderful, happy and healthy (and I am gloriously all three). I take 26 pills a day, a liquid vitamin supplement and have 4 breathing treatments followed by chest percussion therapy that I two two times a day.  I have had two bronchoscopies this year each followed by two weeks of IV antibiotics that my parents give me at home.  I have amazing parents that love me so much and I love them!  I am a warrior and I will beat Cystic Fibrosis.
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My name is Mateo and I am four years old! I have been battling with physical and learning disabilities since I was born. This has not stopped me from enjoying my family, friends , and my latest obsession: superheroes! I am continually showing off my Spiderman moves. My parents have worked tirelessly so I can talk, walk and run just like my friends. Maybe someday you will find me climbing a building just like Spiderman!

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Meet Chelsea, she has Wilms’ Tumor. Wilms’ is a childhood kidney cancer that usually shows up around 2-3 years old and begins with unmature kidney cells that grow out of control. Chelsea has a large tumor mass on her right kidney that surrounds her vena cava. It was the size of a nerf football. Chelsea has been through numerous treatments and procedures but through it all has been such a trooper. Her spirit and her determination to fight her cancer has kept herself and her entire family fighting through all this time! Recently Chelsea reached the end of her battle and now is a beautiful angel. Even though she is not with us in person her spirit and determination live on! She really is a hero.

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Zion is our Littlest Hero in so many way.  My hero has shown me courage and bravery that goes beyond your local comic book hero.  He has endure countless hospital stays to the point where we are familiar with most of the hospital staff. Zion was born with spina bifida he is trached and was tubed fed for the first year of his life. We just left the hospital in December due to an emergency operation that he required.  We were just there in October for a previous emergency operation.  My Littlest Hero is Zion Rangel, he is 6yrs old and a full time wheeler.  He loves to wrestle, make silly faces, and play video games.  He dislikes veggies, dark rooms, and clowns.  He has to take medication, therapy and doctors orders.  My Littlest Hero is my joy, my life, my son.

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At just twenty-one months of age, our little hero Kayla was presenting with flu like symptoms in June of 2008 for a few months. After receiving an MRI on June 23, 2008 it was obvious that Kayla had a large brain tumor in the right frontal portion of her brain. They were only able to safely resect twenty percent of the tumor.  She has been an inspirational fighter throughout her treatment here at St.Jude. Kayla has endured six rounds of chemo and another Craniotomy within these last four months. Each time she has bounced back full of spirit, and even though she is only two years old now it seems that she understands the task at hand and through it all she has stayed positive even through the pain and tears she has found a way to bring us sunshine through the rain. UPDATE: Kayla has earned her beautiful angel wings!

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Meet this Handsome Angel!! Frankie was Born 03-14-2007 and was Diagnosed at birth with Rubsintein-Taybi Syndrome (RTS) a Rare Genetic Disorder. Even with his doctor visits and everything this little guy must endure his family has high hopes for this little man. He is always smiling and also bringing smiles to those who meet him. He is a strong little guy with a bright future ahead of him despite his challenges!

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Ella was diagnosed with Diffused Intrinsic Pontine Glioma (DIPG) a rare brain tumor on 12/7/07. Ella was diagnosed with DIPG on Friday December 7, 2007. With Ella’s strong will, enthusiastic personality and bright light we know she will come through this storm in life. Ella is 7 years old! She loves to read, dance, sing and have fun!!! She has the biggest heart in the world. She has spent the last few days trying to make sure that mom and dad don’t cry. Ella wants to be teacher when she grows up. Ella is like most 7 yr old girls. When Ella was born she brought John and I HOPE. Hope for the family we had always dreamed of after her sister was stillborn at 38 weeks. We will continue to have that HOPE today, tomorrow and EVERYDAY!!! She is truly a gift! (UPDATE: Ella has earned her angel wings and is flying high!)
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When Isabella was born, she weighed just 4 lbs. Her medical diagnosis include esophageal atresia, PDA, ASD, and VSD heart defects, epilepsy, mild hearing loss bilaterally, Celiac disease, and severe oral aversion with g-tube dependence. She has endured 6 major surgeries, including open heart surgery, as well as 9 minor procedures. She has spent over 150 days in the hospital during her lifetime and she has over 20 scars on her tiny body to attest to her struggle. Even with all Isabella must endure her smile never fades away!
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Meet warrior Luke. He had bone cancer and had received a bone marrow transplant from his younger brother and is now in remission, I think the day was pretty overwhelming for him and he didn’t much feel like getting his photo taken (I think he was really just beyond ready to get out of the hospital and who could blame him!!) but they were still able toe sneak in a couple! Luke is mischievous, joyful, brave, intelligent, loving, honest, athletic, outgoing, creative, sensitive, hilarious, thoughtful, hard-working, full of life, artistic, and Godly. Luke loves the Lord very much. He asked Jesus into his heart when he wa four years old. Luke is faithful to pray about things that are on his mind, and he always enjoys reading the Bible. Luke loves to perform his own worship songs. He works to live in a way that makes Jesus happy.
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Allissa is 15 years old and has been diagnosed with Elhers Danlos Syndrome. This is a connective tissue disease that allows your skin, muscles and other connective tissues to be too stretchy/wobbly. This has caused her Odontoid Bone to retroflex backwards into her brain stem and has also caused her to have Cervical Cranial Instability. It has allowed her skull to push downward onto her neck because her neck is too weak to hold it up. It has also squashed her pituitary gland in half and decreased her cerebral spinal fluid in her skull. She does not let her illness drown her hope though. Alissa continues to show everyone around her how to live even against all odds!
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Meet Ben.  He is one cool person.  He is all-boy and has a great sarcastic sense of humor.  (He and I got along pretty well, hahah!) He has an amazing mom, April, and a super adorable sister,  Sydney,  who fight right along side him everyday at St. Jude’s Research Hospital. Ben has a brain cancer called non-germinomatous germ cell tumor, and was diagnosed this summer.  He just finished chemotherapy and thanks to his mad cancer-fighting ninja skills, he has avoided surgery and is now undergoing radiation treatment.
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Hi there! My name is Macy and I was born with an airway the size of a pinhole, yet breathing on my own. Thankfully it was discovered during a routine hernia surgery. Due to that, I had to have a trach for 16 months. I was born with a heart defect known as Tetrology of Fallot that has required 2 heart surgeries. I was also born with a liver defect (an absent portal vein), that was not discovered until I was 2 that will most likely require a transplant later in life. I have now been diagnosed with an unknown muscle disease that is probably a genetic disorder which is affecting my heart, liver, and muscles. I am very strong and determined. I must get that from all the special people in my life!
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Gregory was diagnosed with Juvenile Myelomonocytic Leukemia (JMML).  Monday February 23, 2009.  The day our world changed, forever.  His only treatment option is a Bone Marrow Transplant.  We are currently awaiting an unrelated donor match.  Gregory’s siblings are not a match.  For the time being, it’s about keeping him healthy and waiting for that magic phone call, telling us we have a match!
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Meet our beautiful Julia. We knew at our 20 week ultrasound that something was not developing right with our precious daughter. She was diagnosed with a rare chromosome disorder at 8 weeks old. She developed epilepsy,infantile spasms at six months and for the next 12 months we tried several different drugs to get her seizures under control. e do not know how many days we will have with her doing this well, so we try to value every moment. Julia is a little trooper – despite having cortical blindness and extensive developmental delays, she laughs and smiles throughout each day, reminding us to keep smiling for the gift we have received in her.
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Meet this speical little blue eyed warrior! Eli was diagnosed with leukemia just one week after his 2nd birthday.  With the amazing spirit that only a child can have, he is fighting through the tests and chemo, adapting quickly to his new routine.  Anyone who meets this little guy is instantly in awe and is inspired by Eli’s strength and will to live!
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Kate was born with Pierre Robin Sequence. Never heard of it? Join the legions of parents who were suprised by the birth of a PRS baby. PRS is the name given to a group of 3 markers: micrognathia (small and recessed jaw) , cleft palate & glossoptosis (larger tongue). Sometimes it’s part of a syndrome. Sometimes it’s considered isolated. In all cases, it presents a challenge for parents that most were not at all prepared for. Kate continues to smile through all her trials and always finds a way to be a light even in the darkness!
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Our beautiful daughter Mylee was diagnosed with Chiari type I Malformation at 5 months old. This is a malformation affecting the lower portion of her brain. Mylee also battles severe dysphagia and currently is tube fed only! Mylee will soon undergo Vital Stimulation to hopefully correct her dysphagia. She battles aspiration issues daily but even thorough her stuggles you can always find Mylee playing and laughing and just being a kid!
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Leo was born by stat-csection in his 35th week due to a heart rate of 290 (SVT).  After an 8-day NICU stay, Leo was discharged with only a cardiologist.  Around 4 months of age, we noticed Leo wasn’t making eye contact when he should be.  We were referred to eye doctors and then neurologists.  After an MRI, we discovered Leo must have had a prenatal stroke which caused 2 large cysts on his brain in the occipital-parietal region.  Due to this damage, Leo has microcephaly, developmental delays, he’s legally blind, and has hypotonia which seems to resemble CP, yet there is no definitive diagnosis for that yet.  We also learned along the way that Leo has 3 congenital heart defects and Hypertrophic Cardiomyopathy which is stable using medication. Despite these issues, Leo turned 1 in March of ’09 and he’s an extremely lovable little boy!
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Meet Emma. She is a Little Hero who is full of life! She was diagnosed with ALL- Acute Lymphocytic Leukemia. It originates in the blast cells in bone marrow, thymus, and lymphnodes. In January 2008, Emma’s mom took her to the doctor for hip pain and she was diagnosed then and began treatment the next day. She is now in the maintenance stage and even helps her mom to remember her chemo!!! Emma is full of life. Although she has been through so much, she has not let it get her down! We could learn a lot from this Little Hero!
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Joshua was diagnosed with a cancerous PNET/Medulloblastoma brain tumor in April of 2004. He was 20 months old at the time of diagnosis. He had 5 rounds of chemo, 1 per month through September of 2004. In October of 2004, he had high dose chemo with a stem cell rescue. He was in the hospital until December, and then in isolation at home until February of 2005. He is now almost 5 years out from the original diagnosis. Joshua did really well through treatment. He was really the poster child for “how well” chemo and transplant can go. All of his side effects were minimal. The worst ones were the mouth sores he got during the standard rounds of chemo. He is now 6 years old. He has no deficits from the treatment, and if it weren’t for the scar down the back of his head, you would never guess he had ever had anything wrong with him.
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Kings 15:14 says that “Asa’s heart was perfect with God’s for all of his days”, that is our wish for our son.  At 20 weeks pregnant, when we learned our baby had spina bifida, we decided that he needed a STRONG name. Asa was diagnosed with spina bifida, hydrocephaly and Chiari II malformation. Amazingly, he is learning to walk with the assistance of leg braces and a walker. Asa had some setbacks in 2008 with multiple femur fractures throughout the year but he continues to  shine and bless everyone he comes in contact with.  Asa is a shining light in a dark world.  As a family, he is a hero to all of us.
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Miguel Sanchez is a very brave 11 year old boy fighting Ewing’s Sarcoma. (cancer) like a pro! Even though Miguel has to endure grueling treatments and hard hospital visit’s he is not unlike any other 11 year old you might meet! He love’s to be play video games and spend time with his family and friends. Cancer is just a small road bump in this young mans life, and with his smile and his wit he should be driving right over it with ease!
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Meet our warrior princess!  Baby Alexa was given this name by the NICU staff as she demonstrated from birth to be a very strong and feisty little girl.  This characteristic would serve her well to face the journey ahead.  Alexa was diagnosed with three Congenital Heart Defects (CHD) while still in her mothers womb.  She spent the first month of her life in the NICU/PICU fighting for her life. With her condition, she will continue to require periodic open heart surgeries through out her life as the conduit they place in her heart will not grow along with her. She has taught her family much about courage and strength and having a positive disposition in the face adversity.  She is now 7 months old and growing like a weed and reaching all her developmental milestones!
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Meet Jarvis! He was diagnosed with Bilateral Wilms’ Tumor at 18 mos. of age after 6 months of chemo he had partial nephrectomy of his right kidney leaving only 45% and with additional 6 months of chemo he was diagnosed with Nephroblastomatosis. The tumor has continued to shrink but the location of the tumor is in the middle of the kidney, chances are the kidney will be removed and he will possibly on dyalisis for a couple of years and transplant after 2-3 of being clear of cancer. Even with everything he has gone through, Jarvis still takes on life with hope and with his loving family right beside him!
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Say hello to Jordan! Jordan has something called CP or Cerebral Palsy. CP is a group of disorders that affect a child’s ability to move and to maintain balance and posture. There is no cure for cerebral palsy, but treatment can improve the lives of children like Jordan who suffer from it. Treatment includes medicines, braces, and physical, occupational and speech therapy and a lot of support and love!
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Miss Addy is an almost 2 year old with a giant heart and even more courage.  Addy has been diagnosed with with Arthrogryposis Multiplex Congenita. It’s a rare congenital disorder that causes multiple joint contractures and muscle weakness.  She’s been through so much and still has such a great attitude and personality.  She’s a fighter! She is loved by all that meet her and I was immediately smitten!  Her dream is to meet Dora one day!  She would love to tell other children who have been diagnosed with AMC, to keep fighting, stay strong and keep smiling
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Meet Mackenzie! Within 12 hours of birth, she began vomiting and after MANY tests, it was found that she had a bowel obstruction.  This lead to her first surgery before she was 24 hours old. Eventually, she was diagnosed with Hirschsprurg’s Disease — she had no nerve cells in her intestines and therefor could not more or absorb nutrients.  Her first year of life was full of illness and surgeries — and she started to develop liver failure at 10 months old.  She was eventually listed for a Small Bowl Transplant.  Her mother got the call for her transplant on April 29th, 2003,  an 8 year old boy who passed from a stroke. She has had horrible bouts with rejection and illness, but now is able to act much like a normal 7 year old — playing soft ball, attending the first grade, and riding her 4 wheeler!
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Hi, I’m Carson!  I am 3 yrs old and I have Chiari Malformation and Craniosynostosis. My older sister, Riley, and my older brother, Keegan, both have chiari as well. I am a twin and a preemie. I was born via c-section at 31 week and spent 26 days in the NICU. After I came home, my mom had noticed that my head was not growing correctly. We went to the doctor and we had a CT done. At 4 months I was diagnosed with early fusion of the skull bones. I have had many MRI’s, CT’s, spinal taps, but have not needed a chiari decompression yet.
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Meet Lynzee, she has Neurofibromatosis(NF for short) There is NO CURE. NF causes painful tumor growth on nerve endings, organs or anywhere on the body. Lynzee is currently on a , Zofran, Seizures meds, Asthma meds, Allergy meds plus daily pain medication and addtional pain meds when needed. Lynzee has also been diagnosed with possible Osteoporosis. Despite all this Lynzee is a very brave and happy young lady that goes out of her way to help others. She will always be a hero!
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Meet beautiful Taylor Jones! She has recently been diagnosed with AML Leukemia and her and her family are getting ready to battle and conquer this cancer. She is a fighter and we’re about to witness her strength to the fullest extent. She always has a smile on and knows that she will beat this disease and come out of it a winner!
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Be sure to check back as we are rotating through stories so each child gets a chance to shine!