Eighteen years ago, Thomas and Jodi Sornsin of Tempe, Arizona, were desperate for a miracle. Ben, their two-year-old toddler, needed a liver transplant to survive. Adding to the pain and stress of a critically ill child was the fact that Ben’s illness, diagnosis and transplant came as a complete surprise.
Many transplant families have time to prepare, but the Sornsins did not. On New Year’s Eve 1992, Ben came down with a cold. Two weeks later he was fighting for his life. What happened? Ben was diagnosed with complete liver failure due to a virus of unknown origin. Ben went from being a healthy toddler to a sick child in a hepatic coma in a matter of ten days.
According to Jodi, “Ben was in a coma in the ICU and only hours away from death. We received the news that a liver had been found and he would be transplanted the next morning … a true miracle.”
While Thomas and Jodi were living at Ronald Reagan UCLA Medical Center in Los Angeles to care for Ben, they were confronted with the financial reality of Ben’s transplant. Their health insurance was going to cover only about $100,000 of the transplant bill. Jodi remembers being called to the hospital’s finance office repeatedly and asked how they were going to pay the medical bill. Frankly, neither Thomas nor Jodi knew how that was going to happen.
They needed help, and they needed it quickly.
Meanwhile, friends and family members started asking how they could help this young family, and one friend introduced the Sornsin’s to the Children’s Organ Transplant Association (COTA).
“I made the call to COTA as soon as we heard about this amazing organization and the person on the other end of the phone told me not to worry about the money -- COTA would help us. Once COTA was on board, and our team of volunteers started a fundraising effort, we were never called to the hospital’s finance office again,” said Jodi.
Their second miracle? According to Jodi it was being able to concentrate on their baby’s recovery and not worry about the mounting bills.
A team of volunteers made up of family members, friends and co-workers from Hunter Contracting began working with COTA’s team of professionals almost immediately to launch a fundraising effort with a goal of raising $200,000. According to Jodi, “It was truly amazing how people came forward to help because they saw Ben’s photo on a collection canister or on the television. One man, previously a stranger to our family, saw Ben’s photo, got involved and spearheaded efforts that raised $45,000.”
“Giving Hope … Making Miracles is more than a slogan for the Children’s Organ Transplant Association -- it is a guiding vision,” said Rick Lofgren, President of COTA. “The Sornsin’s story is, unfortunately, all too common… a child who needs a transplant combined with financial issues jeopardizing that child’s life and the family’s future. The miracle is the community that works together to give a family hope.”
Lofgren continued, “COTA was founded in 1986 when a baby boy from Bloomington, Indiana, needed a liver transplant. The community rallied and raised more than $100,000. Even though the child died before a liver became available, their efforts were not in vain. Their efforts started COTA and COTA has since helped give hundreds of children like Ben a second chance at life.”
When COTA celebrates its 25th anniversary in April, Ben will be 20-years-old. He is more than six feet tall. He is a college sophomore honor student working towards a degree in criminal justice. He is a swimmer who swam competitively in high school and at the National Kidney Foundation U.S. Transplant Games. And Ben is healthy.
Ben Sornsin is a miracle -- thanks to the selfless gift of a liver donation. And thanks to the hundreds of Arizona volunteers who worked with COTA to make sure a sick little boy had the chance to become a healthy and happy adult.
“When your child is dying and you need a miracle … COTA is there for you. All those years ago our hope was that we would one day have a normal life. Ben has had a few health-related ups and downs over these nearly two decades post-transplant, but for the most part we are a normal, and very thankful, family.”
The Children’s Organ Transplant Association is a national charity that provides fundraising assistance to transplant families. Since 1986, COTA’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. 100% of all funds raised in honor of transplant patients are used for transplant-related expenses.
The Children’s Organ Transplant Association’s 25th Anniversary Highlights
· The Children’s Organ Transplant Association (COTA) was founded in 1986 following a successful fundraising effort in Bloomington, Indiana. That initial fundraising placed a local toddler on the national liver transplant waiting list.
· Not long after Indiana volunteers raised funds for his liver transplant, they realized other families needed similar help. That core group of committed volunteers founded the Children’s Organ Transplant Association 25 years ago.
· Over the past 25 years, more than 1,600 families have come to COTA with overwhelming financial needs. Every transplant family has received no-cost assistance.
· The Children’s Organ Transplant Association (COTA) began working with young adults with single cell genetic disorders requiring a transplant in 1992. Since then, more than 300 young adults have received COTA assistance.
· No charge for services -- a hallmark in 1986 that is still a firm commitment made by the Children’s Organ Transplant Association to every COTA family.
· Open access to services was important to the Children’s Organ Transplant Association in 1986, and it is still important today. Other than legal residence, age and status as a transplant patient, COTA has no other qualifying criteria.
· The Children’s Organ Transplant Association continues to work with families who came to the organization since 1986. After a transplant patient begins work with COTA, they never get ‘too old’ for COTA services.
· The Children’s Organ Transplant Association has been a partner with transplant centers across the country for a quarter century. Together, COTA and transplant professionals are giving hope to transplant families.
· Over the past 25 years, the Children’s Organ Transplant Association has raised more than $60 million. More than 150,000 people have donated time and resources to COTA to help transplant families. COTA’s commitment to transplant families has not wavered.
If you would like to learn more about COTA, please visit www.cota.org.