19-year-old Cowichan girl needs new liver to save her life

Natalie Williams waits every day for a phone call that she hopes will save her young life.

Natalie Williams waits every day for a phone call that she hopes will save her young life.

Williams, 19, was diagnosed with the life-threatening liver disease biliary atresia as a child and is now on a transplant list for a new liver that is expected to take many months to become available.

But, like many organs that come from donors, livers available for transplants are scarce, so Williams’s task of finding a matching liver in a timely manner is daunting.

With statistics indicating that one in three people who need to have a liver transplant die waiting, Williams wants people to know how important it is for them to volunteer to donate their organs when they die, and make sure their wishes are known among their family members.

Williams said surveys conclude that 90 per cent of Canadians have indicated they would be willing to donate their organs.

But only 18 per cent of Canadians have actually placed themselves on an organ registry for transplants, one of the lowest rates in the industrialized world.

“I keep hoping that I’ll get that call because I won’t survive without it,” she said from her family home in Duncan. “It’s hard for me because I’ve been sick for so long. But it’s a fact that something has to happen to someone else for me to live. My life is now on hold and I’m in pain a lot of the time. I had to drop out of first-year medical courses last spring to deal with this.”

Biliary atresia results from a blockage of the bile duct, which is the pipe that drains bile, a fluid that helps with digestion, from the liver into the intestine.

Biliary atresia is the most common cause for death among infants and children with liver disease, and the leading indication for liver transplants in these age groups, accounting for more than 60 per cent of all pediatric liver transplants in Canada.

At just 10 weeks old, Williams underwent a major operation to try and deal with the disease and it saved her life at the time, but she has been in and out of hospitals and doctor’s offices ever since dealing with complications of the disease and now requires a liver transplant.

She said if she undergoes a successful liver transplant, she should be able to live a full and fairly healthy life, but waiting for an operation that may or may not come in time to save her life is difficult.

Williams said that having people register for any kind of organ transplant is hard enough, but the stigma around liver diseases makes it even harder.

She said there is an incorrect perception that liver disease typically occurs due to lifestyle choices, including drinking alcohol to excess, so many are hesitant to agree to have their livers transplanted.

But after seeing so many babies and adults lose their lives to biliary atresia, and realizing how few people, including many medical professionals, know about the disease, Williams and her family decided to take the bull by the horns when she was 14 years old.

They began the Biliary Atresia Awareness and Research group, a non-profit organization that raises awareness of both the disease and organ donation in 2012.

The organization’s website can be found at www.biliaryatresia.ca. Link to justgiving page for Natalie https://www.justgiving.com/crowdfunding/victoria-caple?utm_source=Facebook&utm_medium=Yimbyprojectpage&utm_content=victoria-caple&utm_campaign=projectpage-share-owner&utm_term=aYKKJG7zB

“Since 2012, we have raised over $10,000 and made thousands of people aware,” Natalie said.

“We’re doing our best to make a difference for people with biliary atresia and anyone who needs an organ transplant.”

Just Posted

Rick Ruppenthal of Saltair will host a 12-hour talk-a-thon Friday, June 18 over Facebook live. (Photo submitted)
Talk-a-thon to focus on men’s mental health issues

Saltair man spearheading a campaign to generate more conversation during fundraiser

Cowichan Tribes man Adrian Sylvester is worried that he was targetted by a trailer hitch thrown from a vehicle. (Facebook photo)
Cowichan Tribes man worried he was target of trailer hitch

Adrian Sylvester says no one has reported a missing hitch after one nearly hit him

Mariah Segee (centre) was named 2021 Lady of the Lake last Saturday, with Megan Rowbottom (left) as first princess, and Macey Anderson (right) as second princess. (Submitted)
Lady of the Lake returns to Lake Cowichan

Mariah Segee takes the crown in first pageant since 2018

Darren Campbell's truck was stolen when he stopped to check on a car in a ditch (pictured) on Cowichan Bay Road on Monday morning. (Facebook photo)
UPDATE: Cowichan Bay Good Samaritan’s stolen truck recovered

‘Very much appreciated the help from so many people. I hope the very best for all of you’

Threads N Tails owner Lee-Ann Burke’s pet clothing has been featured on the cover of the June/July issue of Pet Connection Magazine. (Submitted)
Lake Cowichan business featured on magazine cover

Lee-Ann Burke hopes the extra publicity will increase sales

People watch a car burn during a riot following game 7 of the NHL Stanley Cup final in downtown Vancouver, B.C., in this June 15, 2011 photo. THE CANADIAN PRESS/Geoff Howe
10 years ago: Where were you during the 2011 Vancouver Stanley Cup Riots?

Smashed-in storefronts, looting, garbage can fires and overturned cars some of the damage remembered today

(Black Press Media file)
Dirty money: Canadian currency the most germ-filled in the world, survey suggests

Canadian plastic currency was found to contain 209 bacterial cultures

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

(pixabay file shot)
B.C. ombudsperson labels youth confinement in jail ‘unsafe,’ calls for changes

Review states a maximum of 22 hours for youth, aged 12 from to 17, to be placed in solitary

Eleonore Alamillo-Laberge, 6, reads a book in Ottawa on Monday, June 12, 2017. THE CANADIAN PRESS/Sean Kilpatrick
Parents will need to fight ‘COVID learning slump’ over summer: B.C. literacy experts

Parents who play an active role in educating their children this summer can reverse the slump by nearly 80%, says Janet Mort

The border crossing on Highway 11 in Abbotsford heading south (file)
Western premiers call for clarity, timelines on international travel, reopening rules

Trudeau has called Thursday meeting, premiers say they expect to leave that meeting with a plan

The B.C. government’s vaccine booking website is busy processing second-dose appointments, with more than 76 per cent of adults having received a first dose. THE CANADIAN PRESS/Jonathan Hayward
B.C.’s COVID-19 infections, hospitalizations stable for Tuesday

108 new confirmed cases, 139 in hospital, 39 in intensive care

Graeme Roberts, who was mayor of Nanaimo from 1984-86, died this month at age 89. (Photo courtesy Nanaimo Community Archives)
City of Nanaimo flags at half-mast as former mayor Graeme Roberts dies at 89

‘Giant-killer’ beat out Frank Ney in mayoral election in 1984

Most Read