Our TJ is 15 years old and in the tenth grade. He has been a little fighter ever since he was young, with him being diagnosed with low tone Cerebral Palsy and Autism. At 10 months of age, he started having tonic clonic seizures (full body convulsions). Over the years TJ continues to battle epilepsy (seizure disorder) with multiple medications and neurological changes due to his seizure’s intensifying. His seizure disorder became more complex about six and a half years ago. Now instead of just the tonic clonic seizures he had developed two other type of seizures that had become longer and more intense, triggering each other. The constant seizures became so bad that we had to make the decision to have brain surgery to remove the scar tissue that was triggering his seizures. He started twitching during testing for brain surgery and his doctor prescribed colobazam to help in addition to the depakote medication he was already taking. By some miracle, and most definitely an act of God, all his seizures stopped. But one of the medications that helped stop his seizures caused chronic permanent damage to his pancreas. They diagnosed TJ with chronic pancreatitis, a fatal diagnosis, our world was shattered. But God!!!
TJ’s Gastroenterologist sent us to Cincinnati Children’s Hospital to see if he could be a candidate for TPIAT, a procedure where they remove islet cells from his pancreas and place them in his liver to trick the body into thinking he still has a pancreas. He was evaluated and a stent was placed, helping to decrease his dose of pain medications, and he was able to laugh and be our silly guy again. Unfortunately, his stent started to fail and the extreme pain again. It was time to have the TPIAT transplant.
Despite all of TJ’s health scares, he continues to be a happy, silly boy. All TJ needs are his phone where he can watch Paw Patrol and Peppa Pig, while drinking his soda. He loves playing with his sisters and his dog Rocket. He also enjoys playing with his dingle hoppers (forks) and his fluff (terry cloth bibs). TJ loves to watch numbers count down on a shot clock and his laugh will melt your heart. The biggest blessing in all this, although my big boy is 15 years old, he is mentally only 4 years old and he does not understand what is going on. He is just living every day being his silly self when he is not in pain.
Cincinnati Children’s Hospital has been so amazing to TJ. They told us about COTA (Children’s Organ Transplant Association), an organization that helps with transplant-related expenses for families like ours with such a major surgery and it requiring us to be so far away from home for so long. We will do anything to save our baby boy. TJ has to be in Cincinnati for over 3 ½ to 4 months. All donations to COTA in honor of TJ’s Fight are such a blessing.