John David And His Family Are Reaching Out To Get All The Support They Can In Order For John David To Continue His Battle For A New HEART.
Hi, my name is John David and I am 5 years old; I was born September 5, 2007 in Puerto Rico. When I was born, my mommy, Wilma, had no inkling of the journey we would take together. When I was a week old, Mommy knew something wasn't right; I had a hard time taking my bottle without becoming very, very tired. After taking me to the Pediatricians office, they referred me to a Cardiologist because when they listened to my heart with a stethoscope, my heart sounds were different, something like "SWOOSH, SWOOSH, SWOOSH", when it should've been saying, "THUMP, THUMP, THUMP". After waiting 5 weeks, I was finally seen by a heart specialist who gave me my very first Echo-cardiogram (ECHO). I was diagnosed as having a Total Anomalous Pulmonary Venous Return (TAPVR). What that basically means is that my heart doesn't have the same plumbing as a normal heart, and to fix this, I would require multiple open heart surgeries. My daddy, Samuel, was in the Puerto Rico National Guard, but my parents wanted the very best for me and wouldn't settle for anything less...so my daddy made the decision to join the Active Duty Army and we moved from Puerto Rico to Killeen, Texas. I was only 5 months old when we made the big move to save my heart! Now with access to better care, my first open heart surgery was performed in March of 2008 when I was only 6 months old. The heart surgeons tried their very best to fix my heart, but were unable to do the entire procedure in one operation because my heart couldn't tolerate it. I received a feeding tube in February 2008 because I wasn’t able to eat without excessive vomiting and I can’t heal from surgery without getting the calories and protein I need. Since then, I have had numerous heart surgeries, procedures and hospitalizations that kept me alive. My last surgery was in January 2013 and this is the day our whole life changed from what was “normal” for us, to a battle we HAVE to win-my life depends on it: we were told by the doctors I would now require a heart transplant in order to live. I am now awaiting approval into a heart transplant program that will accommodate ALL my medical needs, not just my heart transplant. I am hoping that this will happen in July and I will then be placed on the Texas Organ Sharing Alliance (TOSA) emergent heart transplant list. My Mommy rarely, if ever, leaves my bedside. She does all my care and knows everything about my medical conditions; when I feel sick and can’t explain what is wrong, my Mommy knows. My daddy and baby brother, Mathew, come every day to visit and play with me. At the end of the day, Daddy leaves to go home and take care of Mathew. Daddy is medically retired from the Army now and since my mommy stays at my bedside to make sure I get the best care possible, she is unable to work. My mommy never shows me that she is worried but I know she is. We have good days and bad days, I understand more than I should, but I know that I will die without my new heart. My parents do everything they can to make life work for my baby brother and me, but it’s a daily struggle for them. My grandparents moved from Puerto Rico to help mommy and daddy with Mathew and to help give mommy breaks to go shower and get me my special snacks. My daddy and brother will be returning to Puerto Rico once I am accepted into a transplant program since my mommy will have to give everything she has during this time. All my family lives in Puerto Rico and it’s just as important that Mathew is also taken care of, so it’s better they return where they can have a support system. I will miss them very much, but I know it’s what’s best for my family right now. I am like any other 5 year old boy; I love Spider-Man, The Hulk, Batman and any other superheroes. I love riding my tricycle around the hospital and going outside to walk around. My favorite show to watch on TV is the old Power Rangers programs. My favorite food is pizza and I LOVE water, neither of which I can have anymore; because I am so sick, I have to eat a special diet because of how my body processes fat, so I have a no fat diet. I also cannot drink much