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

Cache Creek council votes to rejoin local transit system

Details need to be worked out, but hopes are that change can be expedited

Ashcroft residents get information at Community Forum

Water treatment plant, recycling, an Eco-Depot, the budget, and more among items addressed

Elizabeth May’s wedding will be a ‘low-carbon affair’ in Victoria on Earth Day

Green party leader’s wedding party to depart in a cavalcade of electric cars

Gas prices spike in northern B.C. ahead of the long weekend

Fuel went up 17 cents overnight in Prince Rupert

VIDEO: Alberta man creates world’s biggest caricature

Dean Foster is trying to break the world record for a radio show contest

Flooding, climate change force Quebecers to rethink relationship with water

Compensation for victims of recurring floods limit to 50% of a home’s value, or a maximum of $100,000

Storms blast South, where tornadoes threaten several states

9.7 million people in the Carolinas and Virginia at a moderate risk of severe weather

Private cargo ship brings Easter feast to the space station

There are three Americans two Russians and one Canadian living on the space station

Notre Dame rector: “Computer glitch” possible fire culprit

The fire burned through the lattice of oak beams supporting the monument’s vaulted stone ceiling

Should B.C. lower speed limits on side roads to 30 km/h?

Vancouver city councillor wants to decrease speed limits along neighbourhood side roads

Lawsuit eyed over union-only raise for B.C. community care workers

‘Low-wage redress’ leaves 17,000 employees out, employers say

Landlord of alleged Okanagan shooter recounts deadly day

Tony Friesen was working in one of the units of his Penticton building when he heard shots

Foreign national arrested in connection to thefts at YVR

A woman, 60, is being held in police custody as Richmond RCMP investigate

Most Read