COTA for Jack

Our Story

Jack is 10 years old and in fifth grade. He loves rock climbing (both indoor and outdoor), riding his bike, reading, and playing Minecraft with friends. He is outgoing, friendly, and kind, and makes friends everywhere he goes. Jack also has chronic pancreatitis.

From as early as he could talk, Jack complained to his parents about ‘chest pain’. It was brought up at every well visit starting at around 2 years. Each time, the doctor would listen to his heartbeat, ask questions about the pain, then determine it was a non-issue. There were hypotheses from growing pains to heartburn to muscle spasms. Around age 6, Jack’s family noticed he was having lots of GI issues. His pediatrician assumed it was constipation and the concern was not taken seriously. Eventually, the stomach issues got so severe that Jack was referred to GI, where he was told it was likely heartburn or indigestion. Right before Jack’s 8th birthday, he woke up with chest pain so severe that he couldn’t even walk or talk. When it was apparent something was seriously wrong, he was rushed to the ER where they found he was in acute pancreatitis. This began Jack’s two-year struggle with local doctors and specialists to receive the care he needed. After a second hospitalization with acute pancreatitis in 2023 and countless additional misdiagnoses, Jack’s parents reached out to Cincinnati Children’s Hospital for a second opinion.

Cincinnati Children’s Hospital received testing done by Jack’s local team and called his family the next day asking how soon they could come down. It was at this meeting that Jack found out his pancreas had significant scarring, he had stones lodged within his pancreas, and it was not functioning properly. Jack was diagnosed with chronic pancreatitis. A blood test also showed a genetic mutation of Spink1 which causes a person to have pancreatitis and an MRI showed a birth defect in his pancreas (pancreas divisum). These findings meant the pancreas team had to act fast to try to slow the disease. After three rounds of ERCPs, each resulting in acute pancreatitis, and a decline in digestive enzyme production, the pancreas team determined the next course of action would be a total pancreatomy with islet auto transplantation (TPIAT).  By removing the pancreas, Jack will no longer have to deal with the debilitating pain that has become a daily occurrence over the past 8 months. While the surgery will immensely improve Jack’s quality of life, the surgery itself and its recovery will be major. Averaging 10-12 hours, surgeons will remove Jack’s pancreas, gall bladder, spleen, appendix and a portion of his small intestines. The team’s hope is that Jack still has healthy islet cells which they will extract from his pancreas and transplant into his liver. If this transplant takes, he may end up with little to no dependence on insulin. Jack will remain on digestive enzymes for the rest of his life, and time will tell if he ends up diabetic, as well. 

Jack and his family have been traveling back and forth to Cincinnati for procedures and follow-ups. A medical condition of this magnitude can come with many expenses. Some of these are the surgery itself, hospital stay, travel, relocation expenses, follow-ups, treatments, and medications for the rest of Jack’s life. Jack and his family are working with COTA, or Children’s Organ Transplant Association, to raise funds in honor of Jack to assist with a lifetime of transplant-related expenses. Every single donation, no matter how big or small, is greatly appreciated and helps COTA ensure Jack can afford the care he needs into adulthood in his battle with chronic pancreatitis.

The Children’s Organ Transplant Association (COTA) helps children and young adults 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 our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.