July 1, 2025 — July will be a month of celebrations for COTA’s Ward Family of California. When our nation pauses on July 4th to commemorate our independence and recognize those who protect our freedom, COTA Dad Josef Ward, currently serving in the U.S. Air Force, will be one of those we salute. This military family won their son’s liver disease battle eight years ago this month, and have now faced a second, life-saving liver transplant … this time with their daughter.
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.
While his recovery was long and intensive, eventually the family of four found its new routine in Fort Dix, New Jersey, where Josef was transferred with the U.S. Air Force. Nicole and Josef felt settled … Jude’s recovery was going well … and they were thrilled to learn their third child was on the way.
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. Lucie was followed closely by the same team who oversaw her brother’s pre-transplant care at Children’s Hospital of Philadelphia. In early December 2021, they were told Lucie’s liver was failing and that she, too, would need a liver transplant.
“We were devastated,” Nicole said. “Not everyone who carries this Alpha-1 variant develops liver disease to the point of needing a transplant. It was difficult for Josef and me to think about travelling a second transplant journey.”
In November 2022, Lucie had an esophageal bleed that, along with a few other liver disease comorbidities, led to her being officially listed for a new liver in December 2022. But after the holidays were over and the family of five stepped into 2023, her body started to turn things around. Lucie started feeling better, her energy level increased and she was able to keep up with her peers. Her transplant team removed her from the transplant waiting list and she had a fantastic five-year-old summer.
When Lucie started school in the fall of 2023, the constant exposure to germs and keeping up with a hectic Kindergarten schedule became too much for this child with liver disease. She went from full days of school to half days … and then to no days because just being there for two hours was exhausting. It became very apparent she needed to be re-evaluated for transplant as her quality of life declined. She played, ate, slept, watched television and communicated, according to Nicole, “from her central command post on the couch.”
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 non-directed living donor would give a portion of their liver to Lucie and both her liver and her donor’s liver would regenerate so they could both live healthy, normal lives. This was astounding news; Nicole and Josef jumped at the opportunity. “Who would be so incredibly selfless to help another human being by putting their own health at risk?” Nicole remembers saying to Josef. “We decided to move forward because waiting for a deceased donor liver to become available meant more time living with uncertainty and fear.”
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. Once they were told Jude needed a liver transplant, Nicole did hours of online research, including visiting Facebook pages and online support groups. During her research, she encountered a COTA Mom who lived in Florida (as the Wards did at that time) whose daughter had received a liver transplant in Pennsylvania. She strongly encouraged Nicole to reach out to COTA to learn more about how they might be able to help. “We contacted COTA to learn more and soon after we became a COTA family,” Nicole said. “I do not know how to express my gratitude for the COTA Mom who opened the door for us at the outset of Jude’s transplant journey. COTA carried our family through the challenges of Jude’s transplant, and is the same trusted partner now as we travel Lucie’s transplant journey.”
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.”
But Nicole and Josef are quick to point out their experience with COTA has been absolutely the same with each of the kids. “When I first reached out to COTA, I was hopeful they would be able to explain how they could help with the financial burden of our son’s transplant journey,” Nicole said. “What I did not expect was to receive the assurance that everything was going to work out and that we would make it through with all the help we needed. Five years later we learned our daughter would also need a transplant. Before I even had a chance to ask how we could get things set up in honor of our daughter, COTA’s President Rick Lofgren saw us at a New Jersey American Legion event, heard about Lucie’s liver disease and assured us COTA would be there for her, just as they were for Jude.” 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.”
The Ward family is once again on the move – Josef has been transferred to the U.S. Space Force Base in California. For a transplant family, this means the added stress of finding a new transplant team for Lucie’s, and Jude’s, follow-up care, testing, medications and so much more.
But Nicole is up for the challenge and excited for their three children to experience life on the West Coast. She also knows wherever the U.S. Air Force takes their family, COTA will be right by their side. “Without a doubt, a transplant journey is unpredictable. No matter how well prepared you think you are, there will be things that come up you did not anticipate. COTA provides the financial support a family needs for transplant-related expenses, and the opportunity to seek second opinions and obtain top-notch healthcare,” she said.
“In a world of uncertainties, you can be certain that COTA will be a blessing for any transplant family, just as they continue to be for ours.”
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.
Happy 4th of July Ward Family from your COTA Family … and thank you for your service to our country, Josef!
