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Breakfast in Bethel to raise money for 4-year-old girl with liver disease

October 23, 2017 GMT

BETHEL — When AmberJean Hansen learned an anonymous woman wanted to donate her liver to Hansen’s now 4-year-old daughter, she was thrilled, but cautious.

Hansen had tried to donate her own liver to her daughter, Penelope, who was born with a rare pediatric liver disease. But just before the surgery, doctors realized Hansen was not a good match. A second donor later backed out.

But the third donor was committed to helping Penelope, despite never meeting her.

“She never knew what she looked like and look what she did,” said Hansen, who lives in Seymour but grew up in New Fairfield. “She saved a child. She saved a family. It still blows my mind.”

The surgery took place in August surgery. It was successful and Penelope is back to her energetic self.

“Before the surgery, she would get so tired and moody and angry and all that vanished after,” Hansen said.

But the family is still grappling with the cost of the $740,000 transplant, which insurance only covered a portion of, as well as follow-up care and daily anti-rejection medications that help keep Penelope alive.

The family has teamed up with the National Foundation for Transplants, an organization that has generated more than $77 million to assist transplant patients, for a fundraiser.

Michael’s at the Grove in Bethel will host a breakfast at 8 a.m. Friday to recognize and raise money for Penelope and her donor. Tickets are $25 and can be purchased at http://give.transplants.org/


Detail&id=100242 .

Organizers are expecting at least 75 people and hope to raise $6,000, said Betsy Pankulis, a close family friend running the event.

The donor will not be at Friday’s breakfast — she wants to remain anonymous. But the Hansen family has met her.

Hansen 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 wasn’t,” Hansen said.

Since then, Penelope frequently talks about the donor and how she wants to bake her cookies.

The day after Penelope was born, doctors told Hansen and her husband 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.

At six weeks, Penelope underwent a procedure called Kasai, where surgeons took a piece of her small intestine to use as a bile duct in her liver. Hansen said they were lucky to do the surgery so soon, as this procedure only works in infants eight weeks and younger.

Some kids make it to their teens without needing a transplant after Kasai. But, at the age of 3, Penelope was put on the liver transplant list. As Penelope waited, Hansen watched her daughter, who loved Disney’s “Moana”and being active, deteriorate.

Finally, on Aug. 23, Penelope had her transplant surgery.

Hansen described Penelope as a “fighter,” saying nurses told the family Penelope had the quickest recovery after transplant they had seen.

“No one could believe how well she looked,” Hansen said. “It was like that liver was made for her. It took right away.”

Since the transplant, Penelope has gone to the hospital a few times for some complications, but her liver is doing well. Hansen said she hopes Penelope will never need to endure another procedure related to the disease.

“I just want her to live and have a life,” she said. “I want her to be able to be Penelope, I don’t want her to have to be defined by this disease.”