October 1, 2026 – The Children’s Organ Transplant Association is a national nonprofit with an unwavering commitment to be The Trusted Leader Supporting Families … For a Lifetime. COTA was founded in April 1986 when an Indiana family could not afford the liver transplant their toddler son needed to survive. Their family members and friends canvassed neighborhoods and county fairs to collect cash and coins to help. That first group of volunteers formed the foundation of what would grow to become COTA.
Also in 1986, President Ronald Reagan declared October would be recognized as National Liver Awareness Month. Thirty-two years later in October 2018, a family living in New York City heard the same devastating news as COTA’s founding family — their two-year-old daughter needed a liver transplant to survive. In June 2021 that same family was told their baby boy also needed a life-saving liver transplant. This family’s transplant journey, which continues today, is a living testament to COTA’s lifetime commitment. … a commitment that now spans four decades of helping families during some of the most difficult times in their lives.
The Dorfman family now of Saint Johns, Florida, is navigating two transplant journeys. Daughter Kennedy, now eight years old, received a liver from her Aunt Kelly, and their five-year-old son, Caden, received his new liver from their mother. Kennedy and Caden were featured three years ago in COTA’s 2023 Calendar, and in the organization’s media story that was shared throughout Liver Awareness Month that year. The diagnosis that necessitated Kennedy’s need for a new liver is Alpha 1 Antitrypsin Deficiency. Caden’s diagnosis is also Alpha 1, like his big sister, but he also was diagnosed with Biliary Atresia. Alpha 1 is a hereditary liver disease while Biliary Atresia is non-genetic, serious liver disorder.
“Since our family’s last COTA calendar story feature a lot has changed for our family,” Dad Eric said. “Early in 2023 we decided our family needed some year-round sunshine and fresh air to help with the kids’ immune systems so we travelled to Florida to search for the perfect place to plant our roots.”
Almost as soon as they arrived in the Sunshine State, Kennedy began to complain of tummy pain. They quickly took her to the local children’s hospital. Two days went by with no answers; Kennedy was fading fast. Mom Aly encouraged the hospital’s general abdominal surgeon to call the kids’ New York transplant team, which he did. Within minutes of that call, Kennedy was rushed to radiology to undergo a CT scan. Emergency surgery was needed and there was no time for a hospital transfer. The little girl’s bowel had become twisted and was stuck near her transplant site. The Florida surgeon met with Eric and Aly and said they were going to try and save the liver and as much of her bowel as possible. Their plan was to get the blood flowing, leave her open and Medevac her to New York City for her transplant team to take over. Eric said, “Words cannot describe our fear at that moment — this was worse than her transplant day, March 2, 2021.”
Kennedy’s surgery went better than anticipated. They were able to keep her at the local children’s hospital in Florida to recover. Eric said, “As emotional as this was, we knew we had found the right place to call home.” The Dorfmans officially made the move to Florida in July 2023.
The Dorfman family has had, and will have, transplant-related expenses for two kids for many years to come. When they first heard Kennedy was in liver failure at the end of 2020, they were in shock. Eric and Aly remember those dark days. Their fear grew with each test and medical appointment. In February 2021, a transplant social worker at New York Presbyterian suggested they call the Children’s Organ Transplant Association (COTA) to see if the organization might be able to help ease some of their stress. They submitted their paperwork to COTA and hoped to find some relief.
“I will never forget the call we had with COTA’s Rick Lofgren,” Eric said. “Having COTA’s President reassure us we could get through everything we were facing with Kennedy and not lose our home, was truly unforgettable.” Once the COTA for Team Kennedy fundraising effort got underway, it quickly took off and the Dorfmans started to breathe a little easier. Both Eric and Aly also appreciated COTA’s Family Services Team, and still do today. Eric shared, “The COTA fundraising happened so fast and then we started working with these amazing staff members who help with submissions and reallocations for, in our case, huge medical bills. Never once has it been a hassle or another stressor on our long list. COTA makes it all so easy and streamlined, which has been reassuring to us literally since day one.”
With two Dorfman children now post-transplant, Eric and Aly have an interesting perspective many transplant parents do not readily understand. “Transplant is not a magical solution; a post-transplant journey can be just as stressful and frightening as the pre-transplant journey. At times with our kids, we have been drowning in darkness. COTA has truly made us feel that we are not alone in that dark place,” they said.
Eric continued, “We are learning that sometimes you are trading one disease for another and they all come with a lifetime of transplant-related expenses. It literally feels like it is never-ending. But when I get the chance to talk to new transplant families, I always tell them that is does get easier and it does get better … but then I tell them if they have not done so already, call COTA now.”
Eric and Aly say they are fortunate to have incredible health care insurance. But even with great insurance, they also remember right after Kennedy’s liver transplant when the bills started coming, they did not stop. With two post-transplant children, the Dorfmans describe co-payments as never-ending. They agree the transplant itself is very stressful but once the bills start arriving, that stress is multiplied. “Right from the start when we opened the first bill after Kennedy’s transplant and saw the actual itemized costs, we realized very quickly how much we needed COTA. Once you start seeing the actual costs of everything, you truly understand the huge burden COTA takes off your very full plate,” Eric said.
Eric explains what a typical trip to meet with their medical team looks like. “When we go to the hospital for checkups, each exam, each department’s test, each x-ray, each lab draw has a co-pay and they quickly multiply. Then there are the travel expenses and parking payments. For our family, sometimes our co-pays are $500 to $600 for the day plus travel and parking. This is for one day and sometimes our family spends two to three days a week at the transplant center. COTA considers all of these transplant-related expenses that can be submitted for reimbursement.”
With two post-transplant children, Eric and Aly truly understand and appreciate COTA’s role in their family’s journeys. Even though they had relocated to Florida, Caden’s liver transplant was performed in New York City … nearly 1,000 miles away from their home. After Caden’s transplant, the Dorfmans lived in New York for several months post-transplant. They are now relieved to be home in Florida with both kids, but do have to periodically make trips to New York for check-ups and testing.
Adding another potential challenge for the family, Kennedy has started seeing a nephrologist to make sure her kidneys are not being harmed by her anti-rejection medication. But for now, Eric and Aly say the kids are soaking up sun and having fun in their Florida home. Kennedy is in school; Caden is being homeschooled for Kindergarten. The kids have joined local soccer and gymnastics teams, and Kennedy is taking art classes. According to their parents, “They are living their best lives!”
Eric says COTA is a big reason the family is living life without financial fear. “One of the best things COTA gives transplant parents is peace of mind,” he said. “COTA is also a huge safety net not just for us, but for the kids as they reach adulthood and will always have transplant-related expenses. There is so much uncertainty in our world today — especially with the ever-changing insurance industry.”
He continued, “COTA means that transplant-related expenses are not going to be baggage for the kids as they grow older. Why do we love COTA? Our Peace of Mind today … and the Kids’ Peace of Mind in the future. It is a huge gift for which we are eternally grateful.”
COTA’s unwavering commitment … a Lifetime of Support … continues to be important to Eric and Aly. They remember the gut punch they felt when they learned their daughter needed a life-saving transplant – and then hearing it again when their son was born. Not only have they had to navigate the uncertainty of the diagnosis, they have also had to navigate the financial uncertainties associated with two medical intensive transplant journeys. Becoming part of COTA eased many of their fears then, and today, it continues to be a comfort … and will be for a lifetime.
Throughout 2026, the Children’s Organ Transplant Association (COTA) is celebrating 40 years of its commitment to being “The Trusted Leader Supporting Families … For a Lifetime.” COTA is also celebrating four Decades of Donors — those who make the selfless decision to become organ and tissue donors and financial contributors who have helped raised more than $160 million for transplant-related expenses. COTA was founded by one Indiana family in 1986. Today, thousands of transplant families, like the Dorfmans, rely on COTA’s guidance and support, which is provided at no cost.
