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

Long awaited Kelowna murder trial is scheduled to begin Monday

Stephen Pirko is charged in the killing of Christopher Ausman in 2014

Okanagan College bring hot bats to beat Dinos

The Coyotes now top the league

Kelowna awards recognize city’s cream of the crop

The 44th Annual Civic and Community Awards were April 24

Kelowna Falcons re-sign league MVP

Trent Tingelstad will return for the 2019 baseball season

Video: Large dust devil swirls through downtown Chase

Residents look on as column climbs about 90 feet into the air

University mourns student who died in B.C. canoeing accident

Andrew Milner, 19, was in his second year with the University of Calgary’s basketball program

RCMP arrest B.C. man following threatening Vaisakhi Facebook post

Post made reference to pressure cooker bomb at massive Surrey parade

Osoyoos among B.C. resort towns to get share of $2.5-million in tourism cash

Changes to RMI funding are bringing more money to places like Harrison and Tofino

Arrest made in off-road Okanagan park detour

RCMP air services helps track down 36-year-old suspect

Petition urges limits on retail cannabis stores in Summerland

Ban on downtown stores, increased regulations in other areas proposed

Canfor temporarily shutting down lumber mills across B.C.

Low lumber prices and the high cost of fibre are the cause of curtailment, according to the company

Okanagan physician and family reflect passion for medicine with hospital gift

Dr. Paul Cobbin and family donate to the South Okanagan Similkameen Medical Foundation’s campaign

Most Read