Antoine Van Der Meulen arrived in Canada 14 years ago, and was treated at BC Children’s Hospital for a debilitating auto inflammatory disease. (BC Children’s Hospital Foundation Facebook)

Teen shares struggle with rare disease and the help he got from BC Children’s Hospital

BC Children’s Hospital Choices Lottery helps raise money for programs and medical research

Antoine Van Der Meulen, 17, was born with an auto-immune disease that was seriously impeding his quality of life.

Fourteen years ago, when he arrived in Canada from Europe, he was treated at BC Children’s Hospital and diagnosed with cryopyrin-associated autoinflammatory syndrome, known as CAPS, a disease caused by mutation of a gene that results in unusual activity of the immune system.

“It was comforting not only to have a better idea of what was causing my sickness, but also to get treatment, which really helped my case and helped reduce the amount of times per year or per month that I was sick,” Antoine told Black Press Media in a phone interview.

He and his family were living in Germany and Belgium before moving to Canada in 2005. Here, he underwent numerous tests to try to learn what was causing symptoms such as high fever, stomach pain and extreme fatigue.

After he developed a limp and had troubles with his hips, he was referred to a pediatric rheumatologist and was suspected to have an autoinflammatory disease.

“Once we knew what the gene mutation was, it became clear what actual medication he needed,” Dr. Lori Tucker, a rheumatologist at BC Children’s, said in a news release. “So he started daily injections, and he became entirely well.”

“[BC Children’s] almost feels like a second home to me. I feel very safe there,” said Antoine, who lives in Port Moody in the Lower Mainland.

READ MORE: IHOP serving up flapjacks fundraiser

Tucker said a case like Antoine’s is an example of why programs and research at BC Children’s are vital.

“We have all the pieces here,” she said. “We have patients interested in being involved in research. We have a registry where we can collect information. We have our bio bank here that is starting to collect information. We have a researcher with a lab. We have connections to other national and international centres.”

Those programs and research receive support from the BC Children’s Hospital Foundation and the Choices Lottery.

This year’s draw runs until April 11. The grand prize winner gets to choose from one of seven luxury home packages located throughout the province or $2.2 million in cash.

“When Antoine goes to BC Children’s Hospital, he feels safe and secure,” said Sylvie, Antoine’s mom. “It’s unique how they can make sick children feel at home.”

The boy hasn’t had any injections since September 2015.

“Just that fact that Antoine today is able to play soccer with his friends at school even though he doesn’t have the same level of skill is something beautiful,” Sylvie said.



joti.grewal@bpdigital.ca

Like us on Facebook and follow us on Twitter

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Comments are closed

Just Posted

West Coast builder earns four VIBE awards

Icon Developments owner Jamie Carson says collaboration is key.

Ucluelet dedicates off-leash dog park

“I think it’s great. Dogs need a space to run.”

Ucluelet artists launch pop-up art exhibition

Heyduck & Butler opened on July 1 and will run until August 31.

QUIZ: Put your knowledge of Canada to the test

How much do you know about our country?

Tofino and Tla-o-qui-aht First Nation release joint statement welcoming ‘respectful’ tourists

“We have adapted to the new landscape and are very eager to welcome you back.”

B.C. accommodators need phone lines to light up as in-province travel given green light

Travel restrictions during the COVID-19 pandemic have decimated the tourism and hospitality industries

300 Cache Creek residents on evacuation alert due to flood risk as river rises

Heavy rainfall on Canada Day has river rising steadily, threatening 175 properties

First glimpse of Canada’s true COVID-19 infection rate expected mid-July

At least 105,000 Canadians have tested positive for COVID-19 since the coronavirus was identified

Annual music event in Comox Valley celebrates online instead

Vancouver Island MusicFest holds virtual celebration set for July 10

Police ramp up efforts to get impaired drivers off B.C. roads this summer

July is dedicated to the Summer CounterAttack Impaired Driving Campaign

Migrant workers stage multi-city action for full status amid COVID-19 risks

‘COVID-19 has exacerbated an existing crisis’

Okanagan school drops ‘Rebels’ sports team name, citing links with U.S. Civil War

Name and formerly-used images “fly in the face” of the district’s human rights policy, says board chair

PHOTOS: B.C.’s top doc picks up personalized Fluevog shoes, tours mural exhibition

Murals of Gratitude exhibit includes at least one portrait of Henry alongside paintings of health-care workers

In troubled times: Independence Day in a land of confusion

Buffeted by invisible forces and just plain worn out, the United States of America celebrates its 244th birthday

Most Read