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Home > Education Resources > Liver Lowdown > Liver Lowdown June 2014 > Patient Profile

Liver Lowdown


PATIENT STORIES - BILIARY ATRESIA


Liver Disease Happens – In Children, Too

Pick the kid on the lacrosse team who had a liver transplant two years ago and you would be hard-pressed to identify 14-year old Nick Wallace. Diagnosed with biliary atresia at only two weeks old and receiving his first surgery at three and a half weeks, Nick ultimately needed a liver transplant when he entered adolescence. He received a new liver in September 2012 after waiting eight months for a match to become available.

Though he was in and out of the hospital for most of his young life, says Nick, “I never gave up. I always stayed positive and did the things I love to do.” This included surfing, skiing, swimming, playing baseball and golf and his favorite activity – lacrosse. In fact, Nick is going to lacrosse camp this month to play in a tournament. And he managed to keep up in school and is now an 8th grader.

As much as Nick went through, he thinks of others. Understanding what it is like to be in the hospital for long stretches at a time, he started a foundation, Nick’s Picks, that delivers backpacks of toys and games to children who are in the hospital. “I admire Nick so much, more and more each day,” says his older sister Lexie who stayed with him every step of the way, including climbing into his hospital bed as he was wheeled into surgery. “His liver transplant has made him an even stronger person,” she adds.

That strapping 6’2’ young man? That is John McCarthy who was diagnosed with biliary atresia at just eight weeks old and spent most of the first two years of his life in the hospital. He was put on the transplant list at nine months old, his parents waiting a tense 11 months for a liver to become available. Now he is a junior at SUNY Binghamton and looks forward to graduating with a degree in biology. He plans to go on to graduate school to study physical therapy.

Having a sick child, especially when you already have a toddler at home, places enormous stress on the family. Suddenly you are thrust into a world that you never expected to be in. “When John was diagnosed, there was very little information about biliary atresia,” says his mother Mary. “We quickly learned that we needed to be John’s advocates and peppered the doctors and nurses with questions to make sure that we understood everything about the disease and its treatments.”

Long Island natives, John’s family moved to Rochester, Minnesota where they lived for three months during his transplant. When asked what she would say to parents of a baby newly diagnosed with biliary atresia, Mary says, “Research as much as you can about the disease and the best places to be treated. Seek out support from others who have been there. Most of all, never give up hope.”

”My family and I are so grateful to the family who donated their loved one’s liver," says John. "In the midst of their own unbearable tragedy, they thought about helping a child who they didn't know. I know how fortunate I am that I received a liver when so many children are waiting and I am taking full advantage at my second chance at life."

At 17, many girls across the country are busy picking out their prom dresses. And Grace Cummings is no different. She is also an avid ice hockey player.

Grace was born with a choledochal cyst in the biliary tract of her liver. At 12-days-old she had extensive liver surgery to remove the cyst, gall bladder and reroute parts of her intestines. She also was diagnosed with biliary atresia.

“I didn’t feel that different from other kids because I lived a pretty normal life except that I had to take medication every day,” says Grace. “Eventually I was hospitalized more frequently but it didn’t affect my life all that much and I could still spend time with my friends and sister Meghan. I could still play hockey the same way I always had.”

“Having these two conditions together was as likely to happen as winning the lottery twice,” says Grace’s mother Colleen who, along with her husband George, worked tirelessly to find a liver donor by putting out the word in all communications channels and whose pleas went viral on the Internet. Incredibly, the family got the word that a new father offered to donate part of his liver to Grace. “We did not know this person and there are no words to describe how grateful we are at this man’s selflessness and kindness,” says Colleen.

Nick, John and Grace and their families are generous and loyal supporters of the American Liver Foundation. All participate in Liver Life Walks, Flavors and on-line fundraising efforts to help raise money for the Foundation’s Pacific Coast, Greater New York and Connecticut divisions respectively. Together, they have raised thousands of dollars to support public education programs and research.

To children who are living with liver disease and awaiting a liver transplant, Grace tells them to ‘live life to the fullest and have hope as you wait.’

To learn more about biliary atresia, read our feature article.

To learn more about organ donation, visit http://donatelife.net/register-now/.


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Page updated: June 20th, 2014