July 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.
Thirty-three years later in April 2019, a family in Florida received the same devastating news. Their two-month-old daughter needed a costly transplant to survive. The young family had just celebrated their older daughter’s first birthday and were looking forward to having both girls at home together and bonding as sisters. That reality was put on hold for quite some time.
Annabelle Williams was born in February 2019. Parents Christen and Justin were excited for their daughter, Madison, to meet her baby sister. However, the ‘cooing’ sound Baby Annabelle was making after she was born sounded the alarm during her first visit from her pediatrician while in the hospital, she was in respiratory distress. He said Annabelle was in respiratory distress and needed to immediately be transferred to the Neonatal Intensive Care Unit (NICU) at the St. Augustine, Florida, hospital where she was born.
The next few days of the baby’s life were complicated and challenging. On her fourth day of life, Annabelle was placed on a ventilator, but her oxygen levels continued to decline. Many specialists were consulted over the next days. On March 19th, the family heard unthinkable news – there was nothing more that could be done for Annabelle. Family members came in to say their ‘good-byes’ to the baby. But then Annabelle rallied and her medical team agreed to pull her out of palliative care and wait for genetic testing results. Eight days later those results were received; the baby was diagnosed with ABCA3 Surfactant Deficiency. The only cure for this genetic mutation is a double lung transplant.
After extensive research and deliberation, Christen and Justin determined St. Louis Children’s Hospital in Missouri, nearly 950 miles from their Florida home, would be the best place for Annabelle’s transplant. On April 15th, Annabelle was loaded onto a private medical flight to St. Lous. She was listed for new lungs on April 26th. It was during the long days of waiting that Christen was introduced to the Children’s Organ Transplant Association (COTA).
The COTA for Annabelle Rae volunteers received their specialized training from COTA staff members and quickly got to work raising awareness, planning events and raising funds for transplant-related expenses. According to Christen, their volunteer team in Florida utilized COTA’s expertise and resources to plan two successful barbeque events. “They simply blew us away,” Christen said. “There is a famous BBQ restaurant, Woodpeckers, that has been run for years by Mrs. Lisa. She learned about our family’s transplant journey and donated all the food for the COTA fundraiser in honor of Annabelle Rae. Our COTA volunteers were the drivers since her restaurant was about 40 minutes from where we live. They loaded up the delicious, donated BBQ, filled many vehicles and then delivered them throughout St. Augustine to all who had preordered. Mrs. Lisa donated all of the food … ALL of it. I still tear up just thinking about her big heart, the community’s support and all of our amazing COTA volunteers.” This event raised nearly $10,000 for the COTA fundraising effort.
The Williams family was blessed with an incredible team of volunteers who were trained by the COTA staff. Using COTA’s guidance and resources, this team raised more than $57,000 for transplant-related expenses. The family made a difficult financial decision at the outset of Annabelle’s journey when they chose St. Louis Children’s for her transplant. Christen moved to St. Louis with Baby Annabelle and Dad stayed in Florida with their (at the time) one-year-old daughter. There was lots of travel from Florida to Missouri; Christen describes it as complicated and challenging, but only possible because of COTA. “And most importantly,” she added, “without COTA, we would have lost our home in Florida. Period.”
“It is so hard to ask people to help, but I think people are just waiting to help,” Christen reflected. “Learning that through our up and down journey with Annabelle has taken my breath away many times.” Christen’s breath is also taken away when she starts to talk about how COTA has specifically helped – and continues to help – her family.
“COTA has helped so much,” Christen said. “COTA funds have been used for hefty travel expenses from Florida to Missouri, hotel stays, medications and MORE medications, home supplies and a myriad of medical services.” She specifically remembers when Annabelle was struggling to learn to walk, one of her therapists ordered special equipment Annabelle was going to need, but there was going to be a long delay as our insurance considered whether to reimburse the big expense. “This was a reimbursable COTA expense they could help with … and COTA did … and they did it quickly because Annabelle needed it sooner instead of later,” Christen emphasized.
She continued, “My husband and I both work fulltime. Child care is a very big issue when you have a medically fragile child. Especially when you need to hire a child care provider who understands how dangerous any germ is and a provider who can deal with a G-tube. Annabelle could not go to daycare; COTA funds were used for a trained homecare specialist who knew how to provide the care she needed. We can never explain how important it was that COTA funds allowed us to afford that kind of post-transplant care in our home.”
“To this day, COTA helping with specialized home child care expenses was something we cannot even put a price tag on … because it was priceless,” Christen said.
Looking back on how far they have come, Christen remembers her first COTA ‘aha’ moment. “I could not believe it when COTA’s President, Rick Lofgren, called us at the outset of our journey. It was unbelievable – and he talked to us for a long time. He shared stories of other COTA families’ journeys that gave us hope and an amazing sense of comfort. Rick truly believes in helping families like ours. It would be hard not to have an ‘aha’ moment after a call with Rick,” she said. “I knew at that moment, during our first call, that COTA was exactly what our family needed.”
She continued, “The staff at COTA is amazing. Every one of these people know what they are doing and every one of them has a huge heart. No one wants to have to ask for help, but when you need help and you call COTA, you have found exactly what you did not know you needed. I could finally breathe once we started working with COTA.”
The Williams family deeply values COTA’s unwavering commitment to a Lifetime of Support. They vividly recall the moment their world shifted — when the pediatrician entered the hospital room shortly after Annabelle’s birth and urgently ordered her transfer to the NICU due to a life-threatening condition. Just as Dr. Hemant Bhargava’s swift recognition of Annabelle’s respiratory distress saved her life, COTA stepped in to rescue the family from the overwhelming financial burden that followed. Amid the fear and uncertainty of a complex medical diagnosis, COTA provided not only financial relief but also stability and hope during one of the most challenging times in their lives. Becoming part of COTA eased many of their fears then, and today, it continues to be a comfort … and will be for a lifetime.
“Our experience with COTA showed us time and again that we were not alone and taught us that we need to help others in our community when we can,” Christen added. “COTA continues to give us a sense of peace and for that we will be forever grateful.”
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 Williams, rely on COTA’s guidance and support, which is provided at no cost.
