COTA for Warrior Jax

Our Story

Jaxen is a 12-year-old boy diagnosed with Severe Pulmonary Hypertension on April 3, 2024. He was admitted to a children’s hospital 4 days later where he was treated for PH. Over a month’s time Jaxen quickly went from what seemed to be a normal healthy boy to being seriously ill and facing heart failure along side his pulmonary diagnosis.  What wasn’t known at the time was that Jaxen’s pulmonary condition was actually caused by a rare genetic mutation called Sox17. In these cases PH medications actually make you sicker opposed to making you better. Jaxen was at severe risk of Heart Failure, and his health was declining quickly. Because of this he was unable to be transferred to another hospital that would be more helpful to his now known condition. In an attempt to help take the stress off of his heart, he had a medical procedure called Atrial Septostomy. Two days after the procedure Jaxen started losing oxygen to his body and almost lost his life that night. Luckily, he was able to be put on an ECMO device before his heart stopped, and that saved his life. Jaxen was asleep and paralyzed for weeks after that. He was transferred to Children’s Hospital of Cincinnati on June 5 2024, where it was learned that Jaxen’s only way of survival would be a lung transplant. But, only if he would be able to rehabilitate and the odds were against him. Jaxen then had another procedure where he was transferred from ECMO to a Central Device (lung bypass) which he did very well through. As time has went on Jaxen has had to be weened off all prior medications, including PH medications, as well as being  extubated. Jaxen had to  learn how to do everyday tasks all over again such as talking, eating, and walking because he was bedridden for so long. It is August 15, 2024, and Jaxen is now actively waiting on the transplant list and is currently taking assisted walks in the hospital hallways, eating pizza, chugging milk shakes, and chatting away about his favorite pokemon. 

Jaxen and I (mom) have been away from home since April 2024. Everything happened so quickly and unexpectedly, and I was absolutely devastated, as any parent would be. I promised him I would never leave his side, and we would get through this together. We live almost 4 hours away from Ohio. My daughter, Jaxen’s sister, has been staying with my mother so she could continue school and still have somewhat of a normal life while we are gone waiting for Jaxen’s transplant. It’s been very hard being away from our family, our home, and our fur babies. But I wouldn’t give up any of the moments I have had with Jaxen throughout all of this, even the really hard ones. We do whatever we can for our children, and I would give my own lungs for my son if I could.

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.