Once they learned of their newborn’s diagnosis, Kevin and Leah, of Enon, spent the rest of 2011 and all of 2012 juggling doctors’ visits, transplant team meetings, blood draws, feeding therapy meetings and more.
‘The team member...gave us hope’
They knew they were going to need help, especially with medical bills. Then in July 2012, a transplant social worker at Cincinnati Children’s Hospital Medical Center introduced them to the COTA.
“In the midst of so much information and fear, I remember exactly when the social worker told us about COTA,” Leah said.
The Kaufmans did not know an organization like COTA existed, which is a national organization based in Indiana that is currently celebrating its 40th year of helping to “remove the financial barriers to a life-saving transplant by providing fundraising assistance and family support,” its website says.
“The (COTA) team member we spoke to gave us hope,” Leah said. “She said neither of us could be in charge of fundraising because we had too much on our plates. She said once we identified our key volunteers, COTA would come to our town and train them, and then we could submit transplant-related expenses for reimbursement. It was unbelievable.”
Claire’s grandmother Diane Kaufman recruited a team of volunteers in Enon, and they got to work raising funds for COTA to assist with transplant-related expenses.
One of Diane’s favorite COTA fundraisers was held at Young’s Dairy, according to a press release from COTA.
Diane told COTA that “tons of people” came that day and at the end of the evening, the owner gave all of the proceeds to COTA for Claire — not just the percentage of the proceeds they had committed to when they agreed to host a fundraiser.
A match was found
On New Year’s Day 2013, Leah and Kevin got the call that a liver match had been found; 14-month old Claire received her new liver the next day in Cincinnati.
“When they were finally able to exhale after her transplant, they could better grasp the profound impact of knowing the COTA for Claire K volunteer team had surpassed the $50,000 goal,” a COTA press release states.
Several years later, the Kaufmans were invited to speak at a COTA event, where Kevin talked about the association being a “lifesaver” for the famiy.
“I remember standing up in front of this gathering of people and saying, ‘COTA allows transplant parents, like us, to focus solely on their child. Leah and I were given the gift of concentrating on Claire’s transplant journey and not on the endless bills. When you go to your mailbox and every day find one or more bills, it is overwhelming,’” Kevin said.
Though the Kaufmans never lost their jobs during Claire’s transplant and recovery, they were still unable to go to work while they were at Cincinnati Children’s with Claire.
“We had no household income at that time, but the bills never stopped. Like our mortgage payment, the cell phone bills and the utilities…all of those expenses were still there. It did not matter that we were unable to work and, therefore, unable to generate income to pay our bills,” Kevin said.
COTA helped them avoid debt related to the transplant itself and to all of the medical care since her 2013 transplant.
‘I still remember the ‘what-ifs’
Claire is now 14-years old with two other siblings.
“She is thriving,” a COTA press release states.
Claire struggles with illnesses like the flu and gets sick more often than her siblings.
Claire typically misses a week to a week and a half of school each time she catches an illness, but her schoolwork is sent home.
“Leah and Kevin are proud she works hard to stay on top of her assignments and not fall behind,” the COTA press release says.
COTA continues to help the Kaufmans with Claire’s care, including with helping to pay for her medication related to her transplant, which costs about $250 a month.
“We were young parents when we heard Claire needed a liver. And I still remember the ‘what ifs’ that were running through my mind that day. I could not get them to stop,” Kevin said. “Then the transplant social worker told us about COTA, and we could finally breathe and start thinking about a future for Claire…and for our family.”
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