OLATHE, Colo. (BP) – Colorado Baptists Jeff and Tammy Bachman were taken aback upon learning 16 years ago that a second of their daughters, Zoe, was born with Crigler-Najjar Syndrome, a life-threatening liver disorder so rare only 100 cases are estimated worldwide.
Zoe’s older sister Katelyn, diagnosed with the genetic syndrome at 1 month old, had often cried, “Why me? Why am I the only one?” during phototherapy or bright light treatments to remove elevated levels of bilirubin from her body caused by a faulty liver.
“I’ll share my light with her,” were Katelyn’s words upon meeting her sister Zoe and learning they shared the syndrome, Tammy told Baptist Press as Zoe awaits a liver transplant needed to help her thrive.
“We’re looking for the person God has called to be Zoe’s liver donor, and we’re super excited about that,” Tammy said, referencing the successful liver transplant Katelyn received in July 2023.
“We don’t know what God has in store for us. But it was awesome to be able to see the two girls be able to rely on each other,” Tammy said. “Being able to have that bond is special, but also being able to see Katelyn rise through all of it with the joy that she has … we’re super excited to see Zoe go through that process as well and be free from it.”
Zoe’s placement on the transplant list in Pittsburgh in January creates financial needs amounting to $35,000 that insurance will not cover, including the emergency transportation costs of a private jet and post-op housing for a few months for Zoe and one of her parents in Pittsburgh.
“A commercial flight wouldn’t work,” he told Baptist Press. “Just timeframe wise, if we got the call in the middle of the night, there’s just no way. We just don’t want to miss out on the opportunity, however God wants to provide.”
The family’s been in contact with Aero Angel, a company that provides medical charter flights, although a living donor likely wouldn’t require the service. While humans have only one liver, a donor can donate only a portion of their liver, and both the remaining liver and the donated portion will regenerate into a full liver, usually within weeks of the operation, according to medical reports.
“Due to special medical needs, Zoe will be receiving her transplant at Children’s Hospital in Pittsburgh. For this reason, we are also having to raise funds for transportation and additional living costs while in Pittsburgh that insurance will not cover,” Jeff Bachman said in the letter to churches. “If a deceased donor becomes available, we’ll have 6-8 hours to get to Pittsburgh, which will require the use of a private plane through Aero Angel. We have a ‘Go Fund Me’ account set up for Zoe and are trying to raise $35,000.”
Jeff, regional director for the High Country and Grand Valley associations for Colorado Baptists, has placed a financial appeal on GoFundMe.com. Colorado Baptists have circulated a letter among churches announcing his need, and donations may also be made here.
A liver transplant is considered the best treatment option that could cure the disease that causes Zoe to suffer dangerously high bilirubin levels leading to brain damage, jaundice, exhaustion, mental fogginess and other complications.
Katelyn’s transplant allowed her to return to college where she is earning an education degree, a pursuit the disease’s brain fog had made impossible to continue.
Zoe, who has been teased by classmates because of side effects of her condition such as jaundice, has found ways to cope.
“I ignore them most of the time because they get really rude and won’t back off,” she said, but other times she snaps back, cries and prays.
“They’ll say something about me, I’ll say something right back at them.”
Her father chimes in, “I think sometimes she talks about it, and she does cry. Sometimes she prays about it.”
Having seen Katelyn receive a transplant has helped prepare Zoe for the anticipated procedure.
“It was scary, but it was good,” Zoe said. “I was scared that she was going to die, but she didn’t.”
The procedure is extremely painful, the family said, comparing it to the feeling of being hit by a bus for the first few days after the procedure. But Katelyn progressed quickly after that.
The family is relying on God to bless them with a donor, just as He provided a donor for Katelyn.
“She’s been on (the transplant list) eight months and there’s that question of why hasn’t it happened yet,” Jeff said. “We know it’s in God’s timing. God’s got a plan. His plan is not our plan. His plan is so much greater. We know He’s going to provide in His timing.”
