Our son Joey is one of the bravest people I know. He has struggled his whole life with devastating medical obstacles. At birth he was diagnosed with an intestinal disease. In his first year of life he had three major surgeries. The first was when he was less than 72 hours old. The second, which lasted nine hours, was when he was only six months old. Reaching his birthday was quite a milestone.
Things were up and down from there. In first grade he had another major setback and lost more of his bowel. After that, things seemed to reach a plateau. However, this would not last long. In third grade Joey suffered a more severe problem with his bowel. The doctors tried to save his bowel, but he was left with only 55cm. At this point his doctors suggested a bowel transplant. It was at this time that we traveled to Children’s Hospital of Pittsburgh for a transplant evaluation. In August of 2004 he was placed on the waiting list. We waited until September of 2005 for the call that Joey would get his transplant.
Things seemed to improve for a while. Then in July of 2008 we received a devastating diagnosis- Joey had cancer. Luckily we caught it early. Joey received two rounds of chemotherapy. Once again this was yet another hurdle to overcome.
Joey’s health has had many twists and turns-too many to record here. Nothing prepared us for the next steps in Joey’s journey. In September of 2013, Joey suffered yet another setback with a severe rejection episode. He spent the rest of 2013 and most of 2014 in the hospital. The doctors fought to save the transplant; however, in September of 2014 the transplanted bowel had to be removed. During this time Joey was so ill and even lost his ability to walk and use his hands for a period of time.
This brings us to today. Joey has been placed back on the transplant waiting list. Right now Joey is being kept alive by IV nutrition and fluids. However his liver is not doing well, so he will receive a liver and bowel transplant this time. Through all of this Joey has been so brave and has shown such courage. This is the reason why he is a hero to us.