The day after Penelope Hansen was born, doctors told her mother there was a problem, but Penelope was not diagnosed with biliary atresia until she was five weeks old. Biliary atresia is a rare pediatric liver disease, in which the bile ducts are missing or blocked. It affects one in every 15,000 children. The only cure for biliary atresia is a liver transplant.
The family faced two hurdles in seeking a medical solution: finding a donor and paying for medical care not covered by insurance. Penelope was placed on the transplant waitlist at 3 years of age.
Fortunately for the family, a stranger stepped forward to donate a portion of her liver. Penelope’s mother, AmberJean, was cautiously optimistic since she was found not to be a suitable donor and the second potential donor had backed out. The stranger was the third donor and Penelope’s family didn’t know why a complete stranger desired to help their child.
As they later learned, the donor’s father died of liver failure and she was a perfect match for Penelope. On their blog, the Yale New Haven Hospital introduced and shared why the donor, Nicole, was motivated to help, “Nicole’s father was dying of liver failure in 2010 when she heard a story on the radio about a miraculous-seeming medical procedure: living liver donation. It was too late for her dad, but the idea that you can donate a portion of your liver to save a life made a powerful impression on Nicole.”
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Before the donor’s identity was known, Julia Perkins wrote in the Newstimes an article about the donor and Penelope, “AmberJean, Penelope’s mother said, ‘Penelope and the donor hit it off right away, showing each other their scars from the transplant and sharing a pink frosted doughnut. Penelope is always shy around people, but she was not [with the donor]. Since then, Penelope frequently talks about the donor and how she wants to bake her cookies.’”
Perkins also included AmberJean’s initial reaction to learning about a potential altruistic donor for her baby girl, “She [the donor] never knew what she looked like and yet look what she did. She saved a child. She saved a family. It still blows my mind,” she said.
Yale shared this information about the transplant, “On August 23, 2017, Nicole and Penelope were wheeled into adjacent operating rooms. A perfectly sized segment of Nicole’s liver was removed, carried a few steps next door, and transplanted into Penelope. The transplant was a complete success.”
AmberJean was quoted as saying, “Penelope looked better immediately after the surgery. It was a remarkable difference. I felt I could finally breathe for the first time!”
Yale New Haven performed Penelope’s transplant two months after the family contacted the National Foundation for Transplants to seek assistance in raising funds to help offset medical cost related to the pending transplant. Penelope was four (4) years old when she was transplanted. The average liver transplant costs approximately $740,000. And that’s only the beginning. Even with insurance, which covered a portion of the transplant costs, the family faced significant expenses related to the surgery, aftercare, and a lifetime of dependency on prescription drugs.
Volunteers quickly organized a special event in Penelope’s honor. They made goal and the fundraising efforts continued. In addition to special events organized by volunteers, hundreds of people made online donations in Penelope’s honor using the National Foundation for Transplants secure online donation portal.
To learn more about Penelope’s transplant journey, visit her Facebook page here. After satisfying their fundraising goal, the Hansen’s no longer need to fundraise with NFT but encourage others to give to NFT’s Greatest Need Fund.
Penelope received the gift of life from a living donor. The liver and kidney are two commonly donated organs that come from living donors. The National Foundation for Transplants helps both the patient and the organ donor overcome financial hurdles that would prevent the transplant from occurring. Learn how we can help.