The Children’s Organ Transplant Association (COTA) helps children and young adults like Alex who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of Alex T. helps meet transplant-related expenses. COTA’s services are free to Alex and his family, and gifts to COTA are tax deductible to the fullest extent of the law.
Alex is 14, has Autism, Epilepsy, a Connective Tissue Disorder, and was diagnosed with Chronic Pancreatitis in April of 2017. Since then he has not been able to attend school, and has been hospitalized monthly (sometimes months long) with reoccurring bouts of debilitating Pancreatitis. Pancreatitis is extremely rare in children, so treatment and hospitalization has been at Cincinnati Children’s Hospital which is not only one of the top ranked children’s hospital in the nation, but is one of the only centers in the United States that is dedicated to caring for children with pancreatic diseases.
After a year of multiple procedures, tests, and treatment at Cincinnati Children’s, all was unsucessful. Because of this debilitating disease, Alex’s pancreas began showing significant changes and dysfunction consistent with chronic pancreatitis and extensive scarring. As a last resort, Alex was accepted as a transplant candidate at Cincinnati’s Pancreas Care Center, and after extensive evaluations, a date of March 29th was given for TPIAT (Total Pancreatectomy with Islet Cell Autotransplantation). Not only was it a very rare surgery (he was the 26th at Cincinnati Children’s Hospital), but it was also a very extensive surgery. It lasted over 16 hours, and they removed a portion of his small intestines, spleen, gallbladder, appendix, and pancreas. His GI tract was reconstructed, a gj feeding tube was placed, and 6,005 islet cells (that produce insulin and regulate blood glucose) were removed from the pancreas, harvested, and then injected into the portal vein in hopes that they will begin to replicate and function in the liver.
After a very lengthy stay in Cincinnati, Ohio including several hospitalizations, additional procedures, and an additional surgery due to complications, Alex was released to go back home to South Bend, Indiana July 10, 2018. He is still on a large amount of medications around the clock, is still undergoing physical therapy, and is part of a multi-specialty rehabilitation process requiring multiple trips to Cincinnati, Ohio every two weeks at this point.
Alex is now a type 3 diabetic (hopefully not permanently) and requires insulin to constantly be infused and adjusted via an insulin pump which is worn at all times. He also still requires a feeding tube to meet nutritional requirements, but has made significant progress and has begun to eat small meals which is absolutely phenomenal.
Alex has 3 siblings-Gabriel (18), Sebastian (12), and Roman (7). He absolutely adores superheroes, and is commonly referred to as a superhero himself. Alex is also always accompanied by his very unique sidekick service dog, Ling. Ling is a Chinese Crested and assists Alex with anxiety prevention and deescalation (amongst many other heroic deeds).
Your support, well-wishes, and prayers mean the world to our family, but especially to Alex. It is truly a beacon of hope and love for a true superhero warrior. Thank you!