COTA for JP Strong

Our Story

At 22 weeks gestation JP was diagnosed with Hypoplastic Left Heart Syndrome. We were told that he would need to have a heart transplant soon after his birth. On October 22, 1997, JP made his way into this world. He spent the first 8 weeks of his life in the NICU at All Children’s Hospital in St. Petersburg, Florida. On December 18, 1997, he received his new heart. His transplant became the most difficult transplant they had ever done, at that time. He was the 16th transplant performed at All Children’s Hospital. Although he struggled to survive the transplant, he did and went home for the first time three weeks later. This began a life of many cardiology checkups, lab draws, physical therapy appointments, occupational therapy appointments, and tons and tons of medications. At one year old, JP was diagnosed with Hydrocephalus. This added many Neurosurgery appointments and surgeries to his life. JP had to have a VP shunt placed immediately. He has had many, many shunt revisions over the last 24 years. These surgeries have affected his cognition and memory. JP is developmentally delayed. He has processing delays which cause him to have slower than typical responses in conversations and daily living. When he was four years old, he was diagnosed with Pervasive Developmental Disorder Not Otherwise Specified. The easiest way to explain that is that he is an individual on the Autism Spectrum. When he was seven years old, he was diagnosed with Post-Transplant Lymphoproliferative Disease. Thankfully, he was treated and survived. Many individuals do not survive this, as it is in the Lymphoma family. JP has had numerous hospitalizations throughout his 25 years of life. Over the last two years he has been hospitalized at least 12 times. In December of 2021, we found out that he was starting to show some signs of his heart declining. In February of 2022, JP’s care was transferred from All Children’s Hospital to Tampa General Hospital because of his age and the decision that he was going to need a second heart transplant. For the last 11 months he has been watched very closely and treated by the doctors at TGH. He has now started showing signs of liver and kidney issues. He is also displaying further cognitive delays. Because of these things the doctors decided that the time has come for him to be re-listed. On December 11, 2022, JP was added to the UNOS transplant list. We are now awaiting the call that a new heart has been found and J.P. will be going to surgery. We put our faith in The Lord that he will get through the surgery and come home to heal and start living a more active life again. We want him to get back to a life like he had before, working and spending time with family and friends. 

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.