why are these children so special?

               Take some time to stop by and learn more about our Team of heroes!

The stories and photos are updated weekly so check back often!  PAGE UPDATED 6/17/09

Meet beautiful little Wesley! Wesley is fighting CHILD (children's Interstial lung disease). His specific condition is called NEHI (Neuroendocrine Cell Hyperplasia of Infancy) which means that essentially his lungs are scarred. He is on oxygen but that does not keep him down or stop him from smiling and lighting up rooms! He is an inspiration and miracle to many!

My name is Landon Shaffer, and I have a disorder called Menke's disease. It prevents me from doing a lot of things normal kids my age can do, like walk, crawl, talk, and sit up on my own. Even with all of these complications I am still able to smile and bring so much joy to others despite my disease. I am truly a living miracle!

Meet warrior Joey! Joey is fighting a disease called CdLS. CdLS is a congenital syndrome, meaning it is present from birth. Most of the signs and symptoms may be recognized at birth or shortly thereafter. As with other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include: low birth weight (often under five pounds), slow growth and small stature, and small head size...and other changes. But even with everything against him Joey is a thriving little boy! He can crawl, and walk with the assistance of a walker, but only for short periods of time. As for speech, he is rarely able to talk, saying very few words, such momma. He loves music and enjoys his brothers and sisters. His growth is slow, as he is currently 4, but is about the size of a 2 year old and has the a heart bigger and better then most healthy 2 year olds!

Meet beautiful Lily. She has Vacterl,an acronym for a number of medical conditions, each letter standing for a different condition this little 2 year old has to face. She battles respiratory issues quite frequently, and has a history of anemia/transfusions. She will forever have CHD and Lung Disease. But even with all of her medical issues Lily still has time to be a happy 2 year old girl, smiling and laughing and just having fun living life and beating the odds!

Molly is a very strong young lady fighting Osteomyelitis (a bone infection) in her leg leading to many complications and 24 surgeries over the last 2 years. The infection is gone now, but she shattered her weak leg last month and is having a tough time recovering from the operations to fix it. All through her struggles she is still able to smile, and keep hope in her heart!

Meet handsome little Caven! Caven has Lissencephaly, which literally means smooth brain, is a rare brain formation disorder characterized by the lack of normal convolutions (folds) in the brain. It is caused by defective neuronal migration, the process in which nerve cells move from their place of origin to their permanent location. But even with the odds against him Caven is still able to keep his family smiling with his contagious glow that he radiates! He is truly a little hero!

My name is Dante, I am 22.5 months old. I was born on 9/17/2006. I am a Virgo. I am spunky, tough, and lovable. I am very smart. I love Thomas the Tank engine, Blues Clues, & Jay Jay the Jet Plane. I have a big Brother who is 10, and a big sister who is 6. I live in NJ. Right now I live at the Children's hospital of Philadelphia. I have cancer, and it's called Neuroblastoma. My nickname now is "Trooper" Mommy, Daddy, my whole family and the hospital staff call me Trooper now! I am very strong and I am kicking this cancers butt!

Meet Sydney. She is a beautiful 15 year old girl fighting against Rett Syndrome. Rett Syndrome is on the Autism Spectrum, and is often initially diagnosed as autism. But autism is unusual in girls. Rett on the other hand, is rarely found in boys. In addition to typical autism symptoms, like lack of eye contact and loss of verbal communication, Rett usually affects the motor skills more severely than autism. Girls with Rett constantly wring their hands and clap. They usually lose the ability walk, if they ever learned in the first place. Sydney is one of the rare ones that never lost her ability to walk. She is truly a miracle and a very strong young lady

Meet beautiful Charli...Charli was diagnosed with Neuroblastoma, a very aggressive form of childhood cancer. Luckily it was caught early. Charli was at Stage III, rather than Stage IV which has no cure. The family started treatment immediately. She had surgery to perform a biopsy which was to tell more about the type of cancer she had. A week later Charli had another surgery and soon after started chemotherapy. After months of treatment Charli’s tumor shrunk 75% but she is still fighting. Her family is hoping and praying that they are done fighting this beast for good!

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.

Allissa is 14 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!

Matthew is 12 ½ years old. He was diagnosed with Acute Lymphocytic Leukemia (ALL) in August of 2005, he just turned 10. He is STILL going through chemotherapy. Matthew is a hero to all who know him. He lives one day at a time and his smile will melt your heart. He has Down syndrome so that makes him more able to live in the moment and not deal with the vast journey he and the rest of his family as they deal with this necessary 3 ½ year evil called chemotherapy.

Hello, my name is Ian Carine. I'm 2 1/2 years old and I'm living with a very rare lung disease called Neuroendocrine Hyperplasia of Infancy (NEHI for short). I am currently very stable and hope to stay this way as my body gets stronger day by day battling this disease. From birth to around age 2, I spent 50% to 75% of my life in the hospital (Dayton Children's mostly) For now I'm happy to just be living at home full time with my family and yes FRIENDS, such an awesome word! Well I'm of to go play and enjoy this great life I was given!

Meet brave little Austin. Austin was diagnosed at a very young age with Miller- Dieker Syndrome. Miller-Dieker syndrome is a disease characterised by a developmental defect of the brain, caused by incomplete neuronal migration.There is a characteristic facial appearance, delayed growth and mental development, and multiple abnormalities of the brain, heart, kidney and gastrointestinal tract.

Because of his disease there is failure to thrive, feeding difficulties, seizures and decreased spontaneous activity are often seen, and death tends to occur in infancy and childhood. But Austin is beating the odds and not giving up hope!

Avrey is a very beautiful and very strong little girl. Avrey had been feeling sick for a while but it was off and on, her parents finally decided to take her to the immidate health care when she was to tired to even go to the pumpkin patch, she also had some bruising and it seemed to be getting worse. After arriving at the IHC, they sent them straight to the ER to have blood work done, and when we received the results to the blood work we were sent right up to DCH in Portland about 3 hours from here. They immediately did a bone marrow biopsy and confirmed our worst nightmare, Avrey had cancer! But guess what, cancer is not keeping this little lady down. Her bright smile proves that! !

Ramona is a beautiful 3-year-old girl with a rare chromosome deletion called Wolf-Hirschhorn Syndrome or 4p-. Mona has had a lot of little struggles in life but continues to smile and warm the hearts of everyone she meets! She's very strong and just loves to play regardless of anything that ails her. Here's some info on how her chromosome deletion, WHS or 4p-, affects Mona. Mona has kidney abnormalities and recurrent urinary tract infections, epilepsy, small brain (microcephaly), skeletal abnormalities, gastrointestinal problems, severe growth retardation (23 lbs at 3 yrs), mild-moderate mental retardation, behavioral challenges and global developmental delays. But, despite all this, she's the happiest kid around!

This is Jasmine.She is an 11 year old athletic little girl who loves soccer a lot!She is a forward/mid fielder. She has one brother, Jorden. She has a little sister, Kelsey. She was diagnosed with Osteoseracoma. (bone cancer) She was diagnosed on August 30,2006. We were immediately told to go down to Houston to MD Anderson Cancer Center. After beating her cancer she sadly relapsed again in December but if fighting against the cancer again with the help of chemotherapy!

Meet Curt! Right now as of 4/08 Curtis now is at 3mos cognitive and fuctional level, he has 'brain freeze' moments(where his brain slows down so much he can no longer function-swallow,walk,etc)he has severe migranes and trouble tracking objects. as of 5/30 his new dx added is neuro-degentive dystrophy. That's a fancy way of saying the dystrophy is destroying his brain as well as his muscles. We're not ashamed to say we fight these battles on our knees. Curt's family is very strong and they are never going to give up on the hopes that someday Curt will be pain free

Zane is a very strong one year old. He was diagnosed with Lissencephaly. Most people have no idea what this is but it is a rare brain malformation that affects the neuronal migration of the brain during fetal developement. For now Zane's outcome is unknown but we hope for the best each and everyday for this hero and his entire family.

Megan DeGruy is an outgoing 15 year old that lives in Mechanicsville MD. Since birth she has undergone 12 surgeries to correct a wide array of medical issues related to heart and skull defects along with gastro intestinal anomalies. Most of the surgeries were performed between birth and the age of three. At 12 years old she was diagnosed with Arnold Chiari Malformation. Se had decompression surgery in May of 2006 to help correct this. Then in Oct 2006 all the symptoms returned. She has had two lengthy surgeries (one in Aug 2007 and in February 2008) to help her symptoms. Hopefully she will be able to return to school this coming fall as a sophomore.

Meet Joshua (left) and his little brother. These two kids are full of energy said there Littlest Heroes photographer Jennie, you would have never guessed that Joshua is a cancer survivor! His strength and determination as well as the love from his awesome family has kept him going even through the hardest times dealing with treatment and beating his tumor. We are very honored to have met this amazing family with such a special little hero!

Sarah Elizabeth Council born to Benjamin and Michelle Council on July 22, 1997 at 7:07 pm. Sarah has 2 siblings Andrew Thomas and Emma Danielle. Sarah was diagnosed with AML M5 when she was 8 years old. As of July 2008 Sarah has finished chemo and is getting ready to start living a happy life with no more cancer!

Yeshua is 3 years old and had recently had a tumor removed from his brain and now is in remission but unfortunately he hasn’t been able to go home yet from the hospital but they were hoping it would be very soon. Even with all the awful stuff he’s going through he’s an extremely happy little boy, he smiled almost the entire time that Studio Design Company was there taking his pictures! What a trooper!

Alex was diagnosed with Acute Lymphocytic Leukemia ("ALL") on July 30, 2007. Since then this little trooper has been through many treatments to fight away and destroy the cancer trying to consume him. He continues to smile and beat the odds as he is winning his battle against Leukemia!

Meet beautiful Emma Jean. She was diagnosed with Leukemia at 1 year old. She will be doing Chemo until 2011, she is 2 years old now and will be close to 5 when they are all done with it. She has an 80% chance of survival. She is the sweetest most precious thing you will ever get the chance to meet. The room just lites up when she walks into it. She has no problem keeping up with her big brother Noah, who calls her 'My Emma.' She is just the best thing going!

Meet our little hero, Jordan Connor. At two weeks of age, Jordan had surgery to remove a cyst embedded in the lobe of his lung (CCAM), and repair his Coarctation of the Aorta. His second CHD, Bicuspid Aortic Valve, will be monitored. We look at our youngest son with such joy, hope, and admiration as he grows stronger each day. We are thankful to be blessed with this child - our lovey, our HERO! We have two amazing boys, Jordan and Alexander - our life is full and we are lucky to have them..... they both have taught us about life in ways that we would never know without them and our experience.

Meet Claire...she is 9 years old little girl in the third grade. She loves school, things that are pink and being the boss! Claire was diagnosed on 12-13-06 with an inoperable cancerous tumor on her brain stem, a diffuse intrinsic pontine glioma or dipg. This type of tumor is highly aggressive, highly malignant, treatment resistant and recurrent. This is a rare form of terminal cancer that mostly affects children between the ages of 4-10 years old. Even though Claire knows what she is up against she lives each day with a smile and is always looking for the positive!

Ryan’s life and the life of his parents changed forever October 9, 1992, when Ryan was shaken by his home based childcare provider. Because of this Ryan suffers daily with cerebral palsy, cortical visual impairment and profound mental retardation. Ryan is an extremely happy boy, seizure free but remains non-verbal and incontinent. Ryan will never experience independence in his lifetime but he still has had a huge impact on everyone who has met him!

Both of my children, Matthew and Maria have Cystic Fibrosis. Matthew is 6 years old and Maria is 19 months old. Cystic Fibrosis is a genetic disease that effects the lungs, digestive system and other organs. Both children do up to an hour of chest therapy a day to loosen up the mucus in their lungs. They do at least 3 nebulizer treatments daily to assist with fighting off lung infections. Both children take up to 25 pills daily to aide in digestion. There is no cure for Cystic Fibrosis and the median age of survival for children born today with CF is 36 years. Matthew has also been diagnosed with Pervasive Developmental Disorder, which is on the autism spectrum. We have been so blessed to have them as part of our lives.

Adriana is a sweet little baby, just a year and a half old. Her Sparrow story begins on Saturday, September 22, 2007. Her family woke up to Adriana walking with a limp. They thought she might have slept on it wrong so they decided to give it a day. The next day it was worse so they took her to a walk-in clinic and that started their journey. On October 11th they found out she was in Stage 4 of Neuroblastoma. She also has a tumor in her hip, one in her lung, and the cancer is in her bone marrow too.They did get some good news though… Adriana has the curable side of this cancer.

Meet Jon he is 9 years old from Sparta, TN. Jon has Autism, Mild Mental Retardation,global delays,developmental delays,speech delays,vision problems,Scoliosis,Sensory Integration,oral motor problems, and low muscle tones. Little Jon has had to have two eye surgeries so far but even through all that keeps his darling smile on his face!

My name is Maya.(left) I was placed in my Mama's heart in August 2000 and placed in her arms March 2001. I grew in her heart just as all children do. I LIVE with several issues and have lots of tubies including a G-tube in my stomach for venting, a J-tube in my small intestine for medication and venting and a central line (Broviac) that allows me to get medication and nutrition (TPN) through a large vein in my chest, and I also have a vesicostomy so I can use a catheter through a stoma (hole) in my belly. I have a lot of "diagnosis", but it is thought they are part of a channelopathy and mitochondrial cytopathy-a disease affecting the mitochondria necessary for the function of all organ systems and for providing energy to the cells-Some issues I have are autonomic and small fiber neuropathies, seizures, dysmotility, and CVID which is an immune problem so I get IVIG infusions every two weeks. I also have autoimmune issues and need blood transfusions fairly frequently. None of this makes me who I am. I am Maya....I love to play, I love to laugh, and I LOVE TO FLY!!! I never met a person I couldn't make SMILE!

Keiki(left) suffers from Hypopituitarism which is the decreased (hypo) secretion of one or more of the eight hormones normally produced by the pituitary gland at the base of the brain. If there is decreased secretion of most pituitary hormones, the term panhypopituitarism is used. Keirsten has panhypopituitarism. Keirsten does not produce thyroid hormone, growth hormone and ACTH hormone. Through all of this she is one tough happy little girl and we are privileged to be her parents. She also loves to do anything her brother and sister. She is very independent and a fun little girl to be around.

Simon is our beautiful 3 year old boy. He was born with an imperforate anus and was life flighted within hours after his birth to another hospital for surgery. In the weeks and months that followed more birth defects were discovered and more surgeries were endured. Soon we were referred to genetics. Simon was diagnosed with an unbalanced translocation, called Trisomy 11, Monosomy 20; the short name is Trisomy 11. He is delayed physically and cognitively; but is working really hard at sitting and standing. He can do both with assistance. He suffers from cyclical vomiting and hypoglycemia which require frequent hospital stays. Simon loves to clap and listen to music. Simon has a smile that can melt your heart in 2.3 seconds and a will stronger than anyone I know. We are extremely proud of our little boy!

Meet beautiful 16 month old Alan. He has Lissencephaly (a brain disorder that displays similar to Cerbal Palsy) and is deaf/blind. His session was very special to us and to his family as well. He is a miracle and a very strong young man!

Meet beautiful angel Sarah Parker. She was an independent, happy girl with long locks of curly blonde hair.  Just days after her second birthday party, she was diagnosed with a brain tumor. Sarah fought very hard for her life along side her parents and entire family. Sarah won her fight and is now flying high with angels! She has inspired many with her smile and her loving little heart. She has taught this world a lot!

JC was born with single ventricle, TGA, and VSD. He is a true CHD survivor. He Is two years old and had his third major heart surgery on April 2nd 2008.Through everything he still seems to charm everyone! He is our hero.

Adriana is a sweet little baby, just a year and a half old. Her Sparrow story begins on Saturday, September 22, 2007. Her family woke up to Adriana walking with a limp. They thought she might have slept on it wrong so they decided to give it a day. The next day it was worse so they took her to a walk-in clinic and that started their journey. On October 11th they found out she was in Stage 4 of Neuroblastoma. She also has a tumor in her hip, one in her lung, and the cancer is in her bone marrow too.They did get some good news though… Adriana has the curable side of this cancer and is looking to beating this beast very soon!

Isaiah when only several months old was diagnosed with Tay-Sachs disease. His DNA has caused there to be an absence of a very important enzyme that assists in eliminating waste toxins from his nerve cells. This is a fatal, incurable, and untreatable disease. If it follows its expected course, Isaiah will progressively become paralyzed. He will not be able to swallow, see, hear, or even smile. He currently has a life expectancy of 2-4 years old. A nightmare that a short time ago his family didn't even know existed. They are doing there best to stay strong, but they know they will need much support and many sets of shoulders to help bear this burden. Each and every voice adds to the urgency for what we are asking of the Lord. While Isaiah's disease is incurable, they believe a supernatural cure to be within our grasps.

All Images & Content © 2009 Littlest Heroes Project

My name is Evan Keeling, and I was born with a congenital heart defect called Transposition of the Great Arteries.  My pulmonary artery and my aorta were transposed and so my heart was not able to send oxygen out to my body!  I had to have open heart surgery when I was just three days old, and that was really scary for my mommy and daddy.   But I am two now and I am doing great!  The doctor says my heart is beautiful!  I can do everything that other two year old boys do, but I will have to go to a special heart doctor for the rest of my life just to make sure everything still looks good!

When little Adeline entered our lives on April 27, 2008, it didn't take long to discover that something wasn't working just right - her tiny hands and feet were very purple and her color was not improving.  She was airlifted to Riley Children's Hospital in Indianapolis and had her "strawberry-sized" heart repaired when she was just 4 days old.  Addie is recovering well from her CHD -transposition of the great arteries - and with lots of prayers and good doctors and nurses she continues to improve.  We are so thankful for Addie's life - she is our little reminder of all that is good in this world! 

Hi My Name is Abbie Anne!  When I was five days old I went into congestive heart failure because my heart did not develop like most babies.  I was flown to Riley Children's Hospital and was in NICU until they felt I was strong enough to endure open heart surgery.  I had a 14 hour surgery that fixed my heart and gave me a second chance at life here with my family! 

Dakota is a beautiful, bright little girl. Even though she was perfect to us, we knew she was not Neurotypical. Dakota was diagnosed with Autism at age 3. She is amazing and a blast to live with and we wouldn't change a thing about her. She knows sign language and is learning how to read and write so she can better communicate with us.

Lily is one of triplets, born at home in perfect health. At 4 1/2 months old, she got a common cold which became a very rare complication when it morphed into viral meningitis. Her entire body shut down and the virus caused her to have a seizure, which caused her to stop breathing. The lack of oxygen caused severe global brain damage.

Lily has Cortical Visual Impairment, Epilepsy, Cerebral Palsy, Microcephaly, Autonomic Dysfunction, and many more things. She is a light in our life and we cherish the days we have with her. She loves being tickled, bounced, and just loves to snuggle with her daddy.

Max is one of Lily's triplet brothers. He was also born at home in absolute perfect health. Since birth, he reminded us of our older daughter, Dakota, who has Autism. He has since been diagnosed with Autism as well. He has the most beautiful laugh, gorgeous green eyes, and eyelashes that are just to die for. He's perfect in every way and is so much fun to be around. He knows a lot of sign language and is learning to communicate with us through signing.

Grace Noelle Farmer was born on December 20, 2007 with a congenital heart defect. Grace's heart defect was discovered during a routine prenatal sonogram. Originally the doctor's thought that Grace may have Hypoplastic Left Heart Syndrome (HLHS) but after birth it was determined that Grace actually had an Atrial Septal Defect and left and right mitral valve insufficiencies. The left side of Grace's heart is only slightly smaller than the right but the doctors think it is large enough to sustain adeqaute blood volume. Through all of Grace’s struggles she still continues to be a light for others and brings many smiles to the faces of those who meet her.

My son is Eli. He was shaken by his babysitter when he was 5 months old. He spent 2 months at UMC where he had emergency brain surger for a subdural hematoma. In the following week he had 5 stomach surgeries and had a g-tube inserted for feeding. He was kept in a drug induced coma for 3 weeks so the brain and stomach could heal.His current diagnosises are CP, epilepsy, partial blindness, acid reflux, asthma, medullary sponge kidney disease, and kidney stones.Eli is a happy boy despite all his troubles. He loves going places and "talking" to people. He coos and kicks his way thru the days. He loves his older brother very much. Evan is not only Eli's brother, but his protector and backup! He can tell you Eli's med lists as quickly as I can and he is never afraid to stand up for Eli.

Matthew is 4 years old. He has been diagnosed with Mitochondrial Disease Complex I and III. He also has been diagnosed with CIPO(Chronic intestinal pseudo obstruction). He is a smart, happy boy who enjoys puzzles, books and playing games.

Shane Charles Hoffman was born on 5/5/07 at Crozer. He is 1 year old!! He started chemo Jan 5th for a tumor in his belly, went through 4 rounds. He had surgery to remove the tumor on 4/22 which was very successful. He had another 2 rounds of chemo. He has officially beat the 'bull'!!! Shane was cleared of Hepatoblastoma and is now cancer free!! He's our hero!

Beautiful Hannah has spastic diplegia cerebral palsy, which was the result of her birth at 27 weeks.  She will be turning 3, along with her twin sister Isabelle, on September 23.  Hannah is currently learning to walk with a walker, pull to a stand, and crawl on all 4s.  Other than having CP, she is a very healthy, happy, bright little girl with an incredible smile.

Our lives changed forever on May 8, 2006, when our beautiful, vibrant daughter Madeline was diagnosed with Acute lymphoblastic leukemia. She endured two years and four months of chemotherapy and finished August 23, 2008. Madeline is such a trooper and always has a warm smile on her face! May this be the end of our journey with cancer forever, and many beautiful tomorrows for this little hero!

Grace is a beautiful, loving, loveable, affectionate and fun girl who is challenged with the developmental disability of autism. Autism affects Grace's ability to verbally communicate, interact socially and fully comprehend the world around her.  Although the ability to engage in typical conversation eludes her, and she lacks mastery of simply writing her name, Grace is able to powerfully express herself through the medium of intense color and composition. She is a hero who truly teaches us that even though some of us may not have certain things, we can take what we do have, grasp it, and bless others!

Meet warrior Hannah she is 6yrs old. On March 18th, 2008 Hannah was diagnosed with a yucky disease called Acute Lymphoblastic Leukemia. Mom and Dad say that she will feel sick for a while, but should be back to her GOOFY self in no time. Hannah has been through many treatments go get rid of her cancer and fights everyday with a smile on her face and the support from her whole family!

Everett Allan was born on Thursday, October 18, 2007. To everyone's surprise, Everett had a rough time, even from the beginning. Everett was also diagnosed with low muscle tone, meaning he was a bit weaker than other infants his age. Even against all odds Everett continues to show that he is a trooper and that he is a strong boy with a strong spirit!

McKayla Lynne Keelan was diagnosed with Malignant Rhabdoid Tumor (cancer) of the Kidney on April 10th, 2007 after a visit to the ER on March 31st. She went through intense Chemo and Radiation treatments to beat this rare form of cancer and is now cancer free and living her life to the fullest! What a hero!

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!

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!)

Hi my name is Jaiden and I just turned 3 years old. I was diagnosed with Acute Lymphoblastic Leukemia on June 15, 2007. I am a TOUGH little guy and I am going to kick this Leukemia's BUTT!!!

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!

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!

On October 31, 2008 Katelyn was diagnosed with Acute Megakaryocytic Leukemia (AMKL). AMKL is most common in down syndrome children, and is rarely seen in typical children. Katelyn’s family is confident that her early diagnosis and treatment will make all the difference and help to provide a long and full life for this Angel.

Meet beautiful Gabi! Gabi was born with Trisomy 21 (also known as Down syndrome) and Tetralogy of Fallot (a heart defect). Gabi had open heart surgery February 2, 2000 to correct this defect and has been smiling through it all! She is truly a huge inspiration and hero to many!

Payton is a bright eyed 4 year old apple of his Momma's eye. (His sister is featured below!) Due to his biological mother's prenatal alcohol and drug use Payton has been diagnosed with : Periventricular Leukomalacia, Cortical Visual Impairment, Cerebral Palsy, Seizure Disorder, vocal and motor tics and  Early onset Bipolar. Even though he has major brain damage and death, he knows his Momma, Daddy and sisters love him enormously!

Kaitlyn (Katie Lynn) is our smiling baby doll. Like most little girls she is infatuated with her  Daddy. She loves sitting with her big sister and playing with the make - up. She is 3 years old and functions on an almost 2 year old level. Due to the same issues she has been diagnosed with FAE. Her sensory system is very impaired and she has a hard time feeling hot, cold and pain. Regardless of the children's problems they both will grow up knowing more love than they can handle. Their Momma, Daddy and two big sisters will always make sure of that!

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.

Meet Rian - she is 17 and she has a tumor in her spinal cord. She is the most amazing young girl and so full of energy even despite her illness! She loves having her picture taken and she was so much fun to photograph! Her smile and her spirit and truly inspiration to many other young people who are facing the realization of having to fight any type of disease!

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!

Leo was born with Hypoxic Ischemic Encephalopathy. He was not breathing and had no heartrate at birth. He went without oxygen for 4 1/2 minutes before they were able to get him breathing and his heart started. This can cause major problems with the brain. This type of birth trauma can cause swelling of the brain. We had to make the hard decision to have him treated with Cryotherapy. Once he woke up from the Cryotherapy, he started making improvements by leaps and bounds. The second MRI of his brain showed no damage! He started eating on his own and is now feeding himself! We are truly blessed to have Leo as our son. He is proof that miracles happen in this world!

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!

This is our handsome little guy Tyler.  He is 4 years old and has been diagnosed with Cerebral Palsy, Apraxia, kidney reflux that has caused him to loose almost all the function in his left kidney and a genetic disorder that they haven't been able to put their finger on yet.  Tyler's Apraxia has caused Tyler to understand those speaking to him, but hasn't been able to communicate back through speech.  Tyler has spent his first few years in and out of hospitals.  Despite all of that, he is the happiest and most easy going boy we know.  Tyler is truly our hero and teaches us new things about life everyday.

Cate came into this world 3 months premature at 2.5 lbs in January 2008 with her twin sister Lauren 1.15 lbs (my "little" miracles). They had an uphill battle in the NICU, but they were strong and overcame the obstacles that came their way. Shortly after Cate was born, I noticed a small lesion on her skin. We kept an eye on it for a couple of weeks but it never seemed to heal. After talking with us he decided a skin biopsy should be done. When the results came back, Cate was diagnosed with Langerhan's Cell Histiocytosis (LCH). LCH is often referred to as an "orphan disease" because of its rarity little research is funded by the government for the disease. In the beginning, LCH was commonly misdiagnosed as Leukemia because it has similar traits. LCH is treated by oncologists with chemotherapy in most cases. More information on the disease can be found at www.histio.org.  Since Cate's treatments began in April of 2008, we have been able to clear up all of her lesions on her skin, lungs and liver. The doctors feel very good about how things are going for her and so do we. We cannot imagine life without our sweet girl and have been blessed with thoughts and prayers from many. Cate will continue her treatment until April of 2009.  

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.