Bloomington, Indiana – December 7, 2015 – December is the month when many focus on gifts. For a Florida teen and his mom, December is the month to celebrate the ultimate gift — the gift of life. A gift this Children’s Organ Transplant Association (COTA) family has received twice due to one unsuccessful and one successful liver transplant.
The Fast family’s transplant journey began 16 years ago when then two-year-old Alex was having his annual check-up. His belly was slightly distended so the pediatrician directed Alex’s mom, Michelle, to take him for blood work. The next morning, the pediatrician called Michelle at work and told her to pack a bag and drive Alex to the gastrointestinal clinic in Jacksonville, Florida. After five grueling months of testing, Alex was diagnosed with Primary Sclerosing Cholangitis and Ulcerative Colitis. The only known cure this for diagnosis is a liver transplant.
Michelle, a young, single mother, found this news to be devastating. Alex was prescribed numerous medications that would keep the disease ‘in check’ over the next few years. During those years there were occasional hospitalizations, but Michelle was able to manage the treatment and the trips to the hospital.
The situation changed dramatically in September 2004 when Alex, then age six, started vomiting blood and passed out on the floor right in front of Michelle. He was taken by ambulance to a local hospital in the St. Louis area (where they lived at the time) and immediately listed for a liver transplant. On January 3, 2005, young Alex received his first liver transplant at Cardinal Glennon Children’s Hospital in St. Louis, Missouri. Within a week of that transplant, he required two additional surgeries to repair bleeding and a bile duct leak.
Michelle remembers breathing easier and thinking the worst was behind them. That was not to be the case.
Alex’s first year post-transplant was marked with repeated episodes of rejection and numerous hospitalizations. In August 2005, Alex had surgery to repair a perforated colon and after this surgery, he was re-diagnosed with
Sclerosing Cholangitis. Michelle and Alex returned to Florida where multiple attempts were made to save Alex’s transplanted liver including medications, infusions, chemotherapy and external/internal biliary drains. Nothing seemed to help and Alex’s health continued to deteriorate. During this period, Alex contracted several septic infections and the treatment resulted in a major loss of his hearing.
Finally, Alex’s doctors told Michelle a second transplant was their only remaining option. With the many costs associated with Alex’s first transplant still a hurdle, Michelle reached out for help. She soon discovered the Children’s Organ Transplant Association (COTA) and reached out to learn more about this national, 501(c)3 charity. COTA sent a fundraising specialist to the Fast’s Florida hometown and trained a group of friends and family members to become COTA fundraising volunteers. This highly motivated group started immediately raising funds for transplant-related expenses.
Michelle said, “COTA enabled me, a single mother and Alex’s sole caregiver, to focus on taking care of my son throughout his transplant journey without the worry of how I would be able to pay household bills and medical bills. COTA allowed me to have hope because I could focus on Alex’s care and not all of the transplant-related expenses that kept popping up.”
Finding a transplant center that would accept Alex for his second liver transplant became a very long process due to the complicated nature of Alex’s case. While Michelle and Alex waited to see where he would be accepted for transplant, Alex’s health continued to decline and he battled many health issues. On November 26, 2013, Alex and Michelle were sent via air ambulance hundreds of miles away to Children’s Hospital of Pittsburgh where he was accepted for transplant. Michelle and Alex lived in the nearby Ronald McDonald House for almost three month as they waited for ‘the call.’ Alex’s situation was getting desperate. Finally, on February 6, 2014, the transplant team at Children’s Hospital of Pittsburgh came up with a brilliant, life-saving solution.
According to Michelle, “I have witnessed several miracles throughout Alex’s lifetime, but being accepted at the Children’s Hospital of Pittsburgh was one of them. Alex’s second transplant was so complicated, and I don’t believe he could have been re-transplanted anywhere else. Alex got a domino liver transplant from a living donor, who was receiving a cadaveric liver, and the transplant center made it all work perfectly. I met our donor family in the waiting room during Alex’s transplant as they were waiting for their daughter’s transplant as well. It is a bond, and a gift, that will never be forgotten.”
Sixteen years ago this December, Alex was first diagnosed. This Christmas will likely be full of celebration and joy for Alex and Michelle as they enjoy the holiday season in their Florida home. Alex is a gift for Michelle, who went from long ago praying he would live just one more day, to now making plans for his future.
For more information about the Children’s Organ Transplant Association,
or to find a COTA family in your area, please email gro.a1474788085toc@m1474788085ik1474788085.