Stories about: Liver Transplant Program

Sharing biliary atresia — and strength to beat it

Isabella and her sister Melissa, both have biliary atresia.Everywhere Melissa Villaseñor goes her little sister, Isabella, follows.

The 6- and 2-year-old share just about everything. They share big personalities. They share a love of being lively and loud. And, they also share something else — they were both born with biliary atresia.

“I am not going to lie,” says Andrea Torre, the girls’ mom. “I sometimes break down and cry and ask myself, ‘Why me?’”

Biliary atresia is a chronic, progressive liver condition that is fatal if left untreated. For most parents, having just one child with this rare, life-threatening disease is overwhelming.

“My husband keeps me grounded,” she says. “He reminds me, ‘See how much they fight for their health? We have to fight twice as hard.’”

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Milestones made possible #becauseofadonor

There are more than 80 children currently waiting for life-saving organ transplants at Boston Children’s Hospital. The Pediatric Transplant Center team is grateful for the donors who give these kids a second chance.

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A life taken. A life given. A life shared.

Kaitlyn, donor, and Hannah, recipient
Kaitlyn and Hannah

When she read the article in the Cape Cod Times about the 11-year-old girl who underwent a life-saving liver transplant, Melissa Dunphe knew.

“Too many pieces fit for it not to be.”

She knew that the child, who was at the same hospital on the same floor on the same day, had to be the one who received her five-year-old daughter Kaitlyn’s liver.

Five years earlier, at eight months old, Kaitlyn was in a car accident that left her without the use of her limbs and unable to breathe on her own.

During her short life, her parents made moments matter.

“She was a very happy child,” her mom Melissa says. “She loved life — going for walks, having her nails painted and going to the beach. “We knew she wouldn’t live long, but I never expected it to be so soon.”

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Paying it 26.2 miles forward

Tom Williams, a liver transplant recipient, crosses the Boston Marathon finish lineThere is a spot on the Boston Marathon route called “The Liver Mile.” It’s where the grind begins, where the storied course starts to tests runners and where legs often weary from pounding 16.8 miles of punishing roads.

Yet, it’s also where 21-year-old Tom Williams, a liver transplant recipient from Dracut, Massachusetts, first fell in love with the idea of running the Boston Marathon.

“I wasn’t thinking about the difficulty of it,” he says. “I was just thinking, I want to run for other people who are sick.”

Located in front of Newton-Wellesley Hospital, “The Liver Mile” is where volunteers hand out water and gather in support of the Run for Research team, which raises money to benefit the American Liver Foundation. For years, while someone else ran for him as part of the patient-partner program, Tom was a spectator on the sidelines.

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