A U.S. Air Force Family is Celebrating Our Nation’s Independence and Two Kids’ Liver Transplants скачать в хорошем качестве

A U.S. Air Force Family is Celebrating Our Nation’s Independence and Two Kids’ Liver Transplants

One family, three children … two of whom have received new livers and a second chance at life. COTA Mom Nicole Ward vividly remembers the birth of their second son, Jude, in April 2015. Within four weeks of his arrival, he was in distress. Dad Josef was stationed in Florida at the time. Two years later, after many tests and medical consultations, Jude was diagnosed with Alpha-1 Antitrypsin Deficiency, which is an inherited disorder where the Alpha-1 protein becomes stuck in the liver and causes cirrhosis. Many children diagnosed with Alpha 1 require a liver transplant to survive, which was the case with Jude who received his new liver at Children’s Hospital of Philadelphia in July 2017. Lucille ‘Lucie’ Ward was born on June 16, 2018. They knew the infant would need to be immediately tested for the Alpha-1 genetic deficiency. Within days of her arrival, Nicole and Josef learned she was in fact born with the same abnormal gene variation. In December 2023, at the age of five, Lucie was re-listed for a liver transplant with the Children’s Hospital of Philadelphia team, all of whom Nicole and Josef completely trusted. Jude was doing great with his new liver. They hoped, and prayed, their little girl would have the same experience. In February 2024, the team called the Wards and told them they were working with an adult living donor program at a nearby hospital and they had a perfect match. This altruistic gesture from a complete stranger instilled hope in this family’s second liver transplant journey. Nicole said it mirrored the hope she felt when they first learned about the Children’s Organ Transplant Association (COTA) in January 2017. The Children’s Organ Transplant Association (COTA) uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses. In early 2017, a COTA fundraising specialist trained the family’s group of volunteers so fundraising for transplant-related expenses could begin immediately. The COTA staff member shared information about COTA’s fundraising process, fundraising templates, guidance and support, and the no-cost website they would be provided. Six years later, that same COTA staff member would share updated fundraising resources with the volunteer team, and the COTA for Jude W campaign became COTA for Team Ward and volunteers once again raised funds for COTA to assist with transplant-related expenses. Seven years after becoming a COTA Family, the Wards did not panic about the costs that would be associated with Lucille’s transplant, which was scheduled for February 22, 2024. Lucie was taken into surgery around 11:00 a.m. and Nicole and Josef were able to see her around 8:30 that evening. She was doing great immediately after the transplant. Unfortunately, there was a surgical complication that caused her lymphatic system to be damaged. This made the hospital recovery and the subsequent at-home recovery more challenging. She was inpatient for a month post-transplant; she was released to home with an NG tube and two drains in her side to help heal her lymphatic system. Nicole remembers, “Her dad and I kept telling her that when she got her new liver she would feel so much better. She didn’t understand because her recovery was taking so long. Jude was home 11 days after his transplant and was off to the races. It is very important for transplant families to realize no two transplants are the same.” To date, COTA for Team Ward has raised nearly $83,000 for transplant-related expenses. That reassurance was priceless to the Wards who continued to struggle with Lucie’s post-transplant recovery. Eventually her drains were removed, she turned a corner and started feeling much more like herself. Nicole and Josef are relieved to see this new normal for their now, much healthier and happier daughter. “We definitely know that a transplant journey never ends … it spans a lifetime. But we are now able to think about a future for our two COTA Kids, which gives us so much hope.” This year’s 4th of July celebration will be full of fireworks, fun and excitement for the Ward Family of 5. On July 20th, the Wards will celebrate Jude’s 8th liver transplant anniversary — and two days later, Lucie’s 18-month liver transplant anniversary. A new home … new medical teams … new friends and the promise of support and guidance for two lifetimes of transplant-related expenses. The Wards will always be grateful to their COTA supporters and to the individuals who made the selfless decisions that gave both Jude and Lucie a second chance at life.