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

Northern B.C.’s Ridley coal terminal sold, Canada divests, First Nations to own portion

Ten per cent of shares transferred to the Lax Kw’alaams Band and the Metlakatla First Nation

Vanderhoof Clippers are working towards getting a booth rebuilt at the Arena

Terry Lazaruk, president of the club said they haven’t been able to host sanctioned meets due to the lack of a proper timing booth

Skeena mainstem closed to recreational sockeye

Escapements expected to be below 800,000 threshold

Vanderhoof skateboard park almost complete

Different recreation opportunities opening up in the District

FOI data confirms rural drivers discriminated against, former Telkwa mayor says

Analyzed rural postal codes paid just over 2.5 times more in premiums than they received in claims

VIDEO: B.C. MLA Michelle Stilwell takes first steps in nearly 30 years

‘It actually felt like walking. It’s been 27 years… but it felt realistic to me’

Report of dead body in B.C. park actually headless sex doll

This discovery, made at Manning Park on July 10, led police to uncovering two other sex mannequins

Grand Forks fire chief found to have bullied, harassed volunteer firefighter: report

WorkSafeBC, third-party human resources investigation looking into allegations complete

Dog recovering after being drenched in hot coffee, B.C. man charged

Man was taken into custody, charged, and released pending a court date

Taekwondo instructor, 21, identified as B.C. bat rabies victim

Nick Major, 21, an instructor at Cascadia Martial Arts in Parksville

Science expedition to Canada’s largest underwater volcano departs Vancouver Island

Crews prepared for a two-week research mission to the Explorer Seamount

B.C. shipyard to get one-third of $1.5 billion frigate-repair contract

The federal government has promised to invest $7.5 billion to maintain the 12 frigates

Worried about bats? Here’s what to do if you come across one in B.C.

Bat expert with the BC Community Bat Program urges caution around the small creatures

B.C. on right road with tougher ride-hailing driver rules, says expert

The provincial government is holding firm that ride-hailing drivers have a Class 4 licence

Most Read