October is the month full of crimson colors, crunchy leaves and kids dressed up like ghosts and goblins. Or if you are from Orlando, Florida … dressing like ‘The King’. Abel is smiling, dancing and ‘all shook up’ because this October marks almost three years since he received a life-saving bowel transplant.
After a normal, healthy gestation, Abel was born on August 26, 2006, to Holly and Michael. He arrived a bit early, but he looked perfect. But very quickly, the Schiffhauers knew something was wrong – and at only five days of age, he underwent his first surgery to remove a meconium blockage in his intestine. A diagnosis of Hirschsprung’s Disease was made. More tests and surgeries were performed to see how much of his bowel was effected and to remove the diseased portions. Abel was left with about one third of the amount of bowel a normal infant has. After four months in the hospital, a very sick Baby Abel was sent home.
Right around his first birthday, Abel’s physicians at Jackson Memorial Hospital in Miami, Florida, told Holly and Michael the time had come to formally list him for transplant. Abel’s first months of life had been quite rocky; however, news that his transplant would likely be sooner than later caused the Schiffhauers to reach out to the Children’s Organ Transplant Association (COTA) for help.
According to Holly, “COTA provided guidance to our friends and family members and assisted them in organizing fundraisers to help with the myriad of expenses our insurance wouldn’t cover. COTA gave many people who couldn’t be with us in Miami something they could do to help. We were so fortunate to have a great COTA team with great ideas to raise money, and they put their hearts and souls into helping our family.”
On Christmas Day 2007, the call came – small and large bowels were available, and they were a perfect match. The transplant was successful and the family was able to return to their Orlando home just three months later.
“COTA gave us reassurance that we wouldn’t have to worry about finances when we needed to focus our attention on Abel’s transplant journey. COTA galvanized our fundraising team, bringing together friends, neighbors, family members and even strangers and giving them a way to help. That offered us incredible hope,” said Holly.
Abel has been doing well post-transplant, although he remains dependent on Total Parenteral Nutrition (TPN), which he receives via a central line in his chest until his body learns to accept food. His liver has begun to show the strain of being on TPN for so long, but hopefully improvements will come quickly.
Abel’s smile is infectious … he loves to sing, dance and be the center of attention for any occasion. He truly is a charmer.
Clearly, his Halloween costume choice is perfect.
The Children’s Organ Transplant Association is a national charity that provides fundraising assistance to transplant families. COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. 100% of all funds raised in honor of transplant patients are used for transplant-related expenses.
For more information about COTA or to find a COTA family in your area, please email kim@cota.org.