On November 23, 2013, we adopted Jaxon and his twin sister, Ellie. They had been in our care since they were 6 weeks old. Jaxon is a typical 5th grader. He wants to be a fashion designer when he grows up. He also is a huge Harry Potter fan. The best way for me to explain is Jaxon is an old soul. He loves getting to know people and really, truly invests time to learn each person’s past experiences and future desires.

Since June, Jaxon has been having very severe symptoms. We’ve gone to all the doctors we were told to: pediatrician, neurologist, ENT, psychiatrist, and GI. We’ve had no answers and lots more questions along the way. December 5, 2023, I picked Jaxon up from school and he was complaining about his skin hurting and him needing lotion. He was walking extremely bow legged. We got home and he put shorts on so I could help him with his lotion. When I looked both legs were extremely swollen. His stomach was slightly swollen, but nothing major. We were sent to Childrens hospital… Jaxon was diagnosed with heart failure. Yes, I said heart FAILURE. 

He’s had so many tests. So many specialists. But they are trying. The first step is to get symptoms under control, try to find out what’s causing the heart failure, treatment for heart failure, and then what damage has been done and where we go from here. There are also blood clots in his heart and one traveled to his lungs. A week after admission, we were sent to Children’s Hospital in St. Louis for a heart transplant evaluation. 

Since arriving here, Jaxon’s heart has continued to decline. He is now on a LVAD and RVAD while he hopefully awaits a heart transplant.

We don’t know what challenges tomorrow will bring. Thank you to our family, and friends who are family, for checking on him, the other kids, us, etc. Thank you for the prayers most of all because Lord knows Jaxon needs them right now… we all do. We truly do appreciate each and every one of you, the love, and the prayers you’ve sent. Please say some prayers for our Jaxon. Prayers for the medical professionals treating him now and in the future. And please, please hug and kiss your babies tonight no matter the age.

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.