Winnipeg family crowd sourcing liver donation for 11-year-old girl

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This article was published 31/03/2015 (3313 days ago), so information in it may no longer be current.

Allexis Siebrecht loves to rap; she’s taking piano, gets great marks in school and she’s a Bieber fan.

The 11-year-old Grade 6 student also needs a liver.

Desperate to find a living donor and $10,000 in living costs while Allexis is at the Hospital for Sick Children in Toronto, her mother, Liz Siebrecht, has turned to social media for help.

“At any moment, I may be paged and we have two hours to uproot our family and leave for Toronto where we may have to stay up to six months, depending on how well the surgery goes and Allexis’ response to her new liver,” Liz wrote in her crowd-sourcing fund pitch at gofundme.com.

Travel and family accommodation during a transplant and recovery at Sick Kids aren’t covered by health care and the family has to pay bills at home in Winnipeg while they’re away.

Two Facebook pages and the crowd-sourcing account have helped, at least financially. Since last October, the family has raised about $5,000 in donations of $20 to $200 toward a $10,000 goal.

“Allexis was born with a rare liver disease and the doctors say she’s living with end-stage liver disease now. She needs a liver from a living donor in three to six months or the chances of survival are not great,” her mother said Wednesday.

The words rushed from her lips over the phone, but when she comes to the part about her daughter’s odds, Liz’s voice faltered.

She paused. “Not great” was as close as she could get to “what ifs” for her daughter.

At the same time, the 31-year-old single mother is also raising a three-month-old son, Jasper, and another daughter, Jersey, aged six. “I’m still handling it okay,” Liz said.

Allexis has biliary artesia, a rare and sometimes fatal condition in which the openings in her bile ducts are absent or too narrow to work.

Bile ducts are tubes that carry bile from the liver to the gallbladder for storage and to the small intestine for digestion. Bile is a bitter greenish-yellow fluid the liver makes to break down fats, metabolize some vitamins and expel toxins and waste products. Without proper openings, bile builds up in the liver, destroying it and causing liver failure.

Doctors usually diagnose it in newborns, once in every 10,000 to 20,000 births, according to the Canadian Liver Foundation. The condition has no known cause.

Since doctors often catch it in infancy, transplants can be done in children before they turn two years old. Kids often need another transplant in adulthood, according to the U.S. National Institutes of Health website. Without treatment, children rarely live beyond two.

Allexis has already beaten those odds. She was diagnosed at age three and has lived far longer than others.

“I have a rare liver disease as well,” said Robyn Flamand, a friend the Siebrechts know through the Canadian Liver Foundation, where Liz has volunteered. “Allexis is such an inspiration and I know once you meet her, she will touch your heart.”

Allexis has endured eight procedures in her short life, including the only surgery for the condition, a Kasai, in which doctors remove the bile duct outside the liver and replace it with a tube fashioned from the small intestine. If it gets plugged, as occurs in about one third to half of patients, a liver transplant is the last resort.

That’s where Allexis is now, her mother said.

An added complication is the need for a living donor, with an O blood type. “They told me at the last appointment we need to find a living donor because the wait for a deceased owner is long and because of her blood type,” Liz said.

The liver is the only organ that can regenerate, meaning that with a transplant of one lobe, the organ will grow back to normal in both the donor and the recipient.

The Siebrecht family has posted additional information on Facebook, including a notice for a taco dinner fundraiser later this month.

alexandra.paul@freepress.mb.ca