He was born with complex congenital heart defects and was due to have a series of 3 surgeries to make due using what he was born with. The first started at only 3 months old. He was 5 when he had his 3rd, and what we assumed to be his last, surgery called the Fontan. He was doing well throughout the years and living a normal "lazy boy" life but over time he developed P.L.E. which causes his organs to leak protein/ fluid into his lungs & stomach and gives him trouble breathing. We have been battling the P.L.E over the years and for the most part he was healthy. About a year ago is when we noticed he was really starting to have issues. All of his previous cardiac care had been in Kansas City and they determined that his Fontan was now failing.
After a thorough evaluation at St Louis Children's Hospital he was listed with The United Network for Organ Sharing to receive a new heart as a status 1B . We have waited from home for over 6 months for his new heart and during that time his overall health has slowly began to decline. He is now an inpatient @ St Louis Children's Hosp and is listed at the highest priority, 1A.
We have been fortunate to secure semi permanent housing here in St Louis which will allow us to be here with him indefinitely and stay close to the center where he will receive his after transplant care. As a family we have started to openly start accepting gifts to assist with medical, travel & living expenses.
Please join #Team Carmelo in Prayers for Healing of Carmelo The Overcomer as well as Peace for the Donor Family! We are grateful for everyone's thoughts, prayers & support and ask you to like, share & follow "Heal Carmelo's Heart" on facebook for updates on his journey for a new heart!!!
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