Meet Our Heroes

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why are these children so special?

The Littlest Heroes Project photography Team of Heroes is made up of a network of photographers working with a group of very special little kids to bring to light some of the very difficult illnesses they are facing. 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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25379_10150108497500335_215467805334_11394907_690766_n.jpgI 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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3451282660_94d39e0b22Meet 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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4310677048_6f5c59b696_b.jpgMeet 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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Kayden021 copyOur 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 003Trip 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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17465_399494235334_215467805334_10438970_5690202_nI 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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10Jozlynn 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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30This 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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sean37This 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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Josh & Ellie (1 of 1)-6In 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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DSC_0226-1Say 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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Archon_6This 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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littlestheroesproject-54.orgHi, 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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blondephoto-mateo-9319My 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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459716899_nTuss-XLMeet 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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3215540957_3704f627af_oZion 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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IMG_9908 copyAt 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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Hudson17elhpMeet 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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2867972991_3ebbb8f319_bElla 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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Griggs 09When 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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018Meet 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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5df4df1111a7dd9845965a9Allissa 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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1esm-1 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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IMG_5559Hi 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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3489483533_d0627d9f32_o 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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littlestheroesproject-102.orgMeet 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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LHP- Eli-198Meet 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 058a 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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IMG_3998 copy 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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IMG_8396 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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Picture 8 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-1 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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littlestheroesproject-24.org 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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littlestheroesproject-33.org 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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littlestheroesproject-67.org 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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littlestheroesproject-45.org 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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littlestheroesproject-73.org 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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littlestheroesproject-97.org 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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littlestheroesproject-92.org 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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littlestheroesproject.org
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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IMG_8134Meet 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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588e742511da2cf7b6a6d8d 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 weekly so each child gets a chance to shine!

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