JJ was born with tricuspid atresia where his right pumping chamber never formed. We knew this prior to his birth which resulted in him being born and having his first surgery at one week old. We stayed in the hospital for a month and during that month it was hard to see your baby hooked to more tubes and wires than you could see flesh. After a month we got to take him home and it was hard being a teen mom, but it was especially scary being a mom to an infant so fragile. I remember nights I didn’t want to sleep in fear he wouldn’t wake up.

Fast forward to 6 months old, JJ had his second heart surgery where he suffered a heart attack and we stayed for observation. He is a strong baby; he did good and we got to take him home on more meds than he was on before. 

At 7 years old he had his third surgery at Phoenix Children’s Hospital in Arizona. He understood more what was wrong with his heart and he was no stranger to hospitals. Being in and out of clinic and blood work biopsies, he was held behind in school due to the amount he missed … but boy does he love school and his teachers and friends; he’s smart, loves science, space and math. 

After that surgery for the 5 years after you wouldn’t think he’s been through so much — much less having a bad heart. He’s always been happy and smiling and playing; he never could keep up with others, but he tried. Now today being thirteen his outside started matching his inside. He wasn’t himself, he had little to no energy, he wasn’t always smiling and joking, he was living every day with chest pains and headaches. He was finally admitted to the hospital and he’s been there for evaluation and testing waiting for a new heart so he can live a life he’s been longing for.

When you start talking about transplant, pre & post doctor visits, travel to and from, a lifetime of prescription medicines, expenses, it is very overwhelming. I quit my job which I don’t regret — my children and JJ’s journey is my number one priority. And thanks to COTA we have a way for family, friends, and others to help us along this journey.

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.