Addyson was born with Spina Bifida, myelomeningocele, hydrocephalus and clubbed feet. Due to her Spina Bifida, she was diagnosed with a neurologic bladder that required surgery. She loves her big brother Leo more than anything and he is her biggest cheerleader. She lights up a room when she smiles and everyone asks her parents how they can say no to her because she is so cute. She has low mobility and stability in her legs so she uses a walker and a wheelchair for long distances. She does not let her situation stop her from living and is becoming more independent every day.
Adrian has a severe heart condition and at the time of birth did not weigh enough to undergo surgery. He was born at 3 pounds 7 ounces. His mom was told she had no other option and Adrian was then released from the hospital into hospice care. The doctors told his family he would not survive more than 48 hours after being disconnected from all of his machines. Days turned into weeks which turned into months and Adrian was still here and making improvements! He smiled at 3 months old and started to laugh at 4 months old. His family then found out that Adrian had a form of primordial dwarfism. The doctors then reconsidered doing the heart surgery! Adrian received his heart surgery on February 13th, 2015 and is now doing great! His family attended a dwarfism conference and found out that Adrian WILL be able to walk and talk! Most importantly, he is the happiest kiddo ever!
Avery and his twin brother Easton were born 17 weeks early at just 23 weeks and 2 days. Each boy weighed about 1.5 lbs. The first few days of life for Avery and Easton were the most critical. From birth, Easton was most fragile of the two boys and after 12 days he passed away. Avery was a patient in the NICU at Riley Hospital for 135 days. His biggest obstacle was severely underdeveloped lungs. Due to the expertise of the amazing people at Riley, he progressed from a high-frequency ventilator to a conventional ventilator then to CPAP and eventually was able to go home on lower forms of oxygen therapy. During his stay, he was a part of two research studies. One was an eye study and the other was a pulmonary study. Avery is now a healthy, happy, outdoor loving boy.
Bella was diagnosed with a benign brain tumor called craniopharyngioma on her pituitary gland, along with severe hydrocephalus (excessive brain fluid) in 2015. She was immediately referred to Riley and was scheduled for emergency brain surgery the very next day, in which they found the 2nd tumor. She was able to completely drain the first one, but the remaining tumor tissue couldn’t be taken out safely. Bella began daily proton beam radiation for 6 weeks. In September 2016, she received the news that she and her loved ones prayed they’d hear: the tumor had collapsed. In 2017 Bella developed another tumor during her senior year of high school. With her determination and strength, she got through treatment and graduated high school Spring of 2018. She is currently a college student and loves attending Marian University.
Less than a day after BJ Yoho was born in 2002, he had surgery to relieve pressure from complications of Spina Bifida. He has had a total of 17 additional surgeries and the amputation of his right leg, which did not grow correctly after birth. He only has one kidney and is wheelchair bound due to his Spina Bifida. BJ does a toy drive every Christmas for Riley Hospital, which is how he gets his nickname “BJ Claus.” He also directed a movie at Jagathon titled “For The Kids.”
Braden was born with Spina Bifida, Hydrocephalus, and an Arnold Chiari II malformation. His parents were told that he would probably wouldn’t even survive birth, and even if he did that he would have very little use of his lower body, and he’d have very little cognitive ability- but he proved them wrong! He has had 23 surgeries- all but one has been at Riley Hospital. He currently goes to Riley at least twice a week for therapy.
At 14 weeks into
Braedon’s mom’s pregnancy, she found out that she was having monoamniotic twins. This meant that she was having identical baby boys, however, they were both in the same amniotic sac. There was an 85% chance that both boys would die prior to birth due to the possibility of umbilical cord entanglement. At 26½ weeks into the pregnancy, an ultrasound showed that one of the twins heart had stopped beating and he had died. At 28 weeks, which is 3 months early, Braedon was born via emergency C-section as his heart had begun to slow and then stop beating. He was 2 lbs. 3 oz and 14 inches long. Upon birth, it was diagnosed that Braedon was the recipient of a condition called Twin-to-Twin Transfusion Syndrome (TTTS), which can only happen with identical twins. Braedon was the weaker twin and required 3 blood transfusions within the first hours of his life due to extreme anemia. During the next 11 weeks, Braedon developed many complications and almost died several times due to his prematurity. Braedon is now a perfectly healthy boy. He is an honor student, athlete and very musically talented.
Carissa was diagnosed with Juvenile Dermatomyositis when she was 10 years old, which is an autoimmune disease that affected her skin, muscles, and joints. Arthritis is the only thing that still affects her from the disease. She is now a student at Marian University and is studying nursing! The nurses at Riley inspired her to become a nurse.
Carter went to Riley because he was having a lot of trouble breathing and after testing positive for H1N1 the doctor feared that he may have a secondary bacterial pneumonia infection. A helicopter transported him to Riley Hospital for Children from Lafayette. Carter was admitted to the PICU and the doctors worked tirelessly to find the right combination of meds and breathing machines to help him. Luckily their treatment was successful and now Carter is a healthy teenager. In 3 short years, Carter has raised over $13,500 for Riley.
At 1-month-old CJ underwent surgery to fix a hernia. He recovered and again was doing well but then his family got another shock when he turned 18 months old. The daycare where they took him called and said that CJ was not feeling well and that his stomach had “hardened” and he would not let anyone touch him. His family rushed him to the pediatrician who then sent them to Riley Hospital. The doctors and staff were wonderful and informed them of every test and procedure that they were going to do on CJ. His family was supported throughout their entire time at Riley. The doctors found that he had a 2-pound lymphangioma which is a large gel-filled sack in his abdomen that had solidified. He would require surgery to have it removed and at just 18 months his family was not ready for their son to go through another surgery. They warned his parents that he could come out without a stomach, with a permanent colostomy bag, or worse, it could even be cancer. The surgery ended up going well and fortunately, none of his vital organs were caught in the sac so it came out in one large piece and nothing else had to be removed or repaired. Thankfully the lymphangioma has not returned. His family cannot thank the doctors, nurses, and staff at Riley enough for the great care their son received.
Coleton was diagnosed with an extremely rare and potentially aggressive brain abnormality, Chiari 1 Malformation and Syringomyelia, in December 2013. He was only receiving 25% spinal fluid flow when he should’ve been receiving 100%! Coleton underwent brain surgery in March of 2014 and has since then had three additional surgeries. Today he still struggles with complications from both diagnoses.