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

Just Posted

Your weekly Mountain Minute

This week’s top stories… Continue reading

Highway 1 closed to due fatal accident east of Revelstoke

A dump truck lost control and the driver was ejected

Stetski talks up NDP election platform

NDP candidate for Kootenay-Columbia riding outlines election ‘commitments’ to Canadian voters

UPDATE: Boat sinks in less than a minute on Mitten Lake

A Saturday afternoon at Mitten Lake quickly turned sour for a local… Continue reading

Rich the Vegan scoots across Canada for the animals

Rich Adams is riding his push scooter across Canada to bring awareness to the dog meat trade in Asia

Recall: Certain Pacific oysters may pose threat of paralytic shellfish poisoning

Consumers urged to either return affected packages or throw them out

How a Kamloops-born man helped put us on the moon

Jim Chamberlin did troubleshooting for the Apollo program, which led to its success

Sexual harassment complaints soaring amid ‘frat boy culture’ in Canada’s airline industry

‘It’s a #MeToo dumpster fire…and it’s exhausting for survivors’

How much do you know about the moon?

To mark the 50th anniversary of the first lunar landing, see how well you know space

Body, burning truck found near northern B.C. town

RCMP unsure if the two separate discoveries are related

Couple found dead along northern B.C. highway in double homicide

Woman from the U.S. and man from Australia found dead near Liard Hot Springs

UPDATE: West Kelowna fawn euthanized, not claimed by sanctuary

Gilbert the deer has been euthanized after a suitable home was not found in time

BC Wildfire Service warns wet weather no reason to be complacent

Fire risk currently low for much of B.C. compared to same time over last two years.

Most Read