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

FILOMI Days sees massive crowd arrive in town to enjoy weekend festivities

The North Island Gazette was at just about every event this weekend.

Rumble on the Runway returns to Port McNeill Airport

In fact, the event is so popular that officials say it is usually sold out months in advance.

Tahsis Inlet voted BC’S top boating destination for 2019

Tahsis Inlet is located midway up the west coast of Vancouver Island

Oceanfront RV campground in Port Alice is open for business

Anstee plans to have other amenities besides camping, “but for now, this is it.”

Port Hardy RCMP cleared in arrest that left man with broken ribs, punctured lung: watchdog

The IIO noted the matter will not be referred to crown counsel for consideration of charges.

VIDEO: Young couple found dead in northern B.C. had been shot, police say

Chynna Noelle Deese of the U.S. and Lucas Robertson Fowler of Australia were found along Highway 97

VIDEO: Man found dead near B.C. teens’ truck could be linked to a double homicide

RCMP said they are looking for Kam McLeod, 19, and Bryer Schmegelsky, 18, of Port Alberni

Latest plan is to fly trapped fish by helicopter over Big Bar slide

Multi-pronged plan set in motion to freesalmon blocked by landslide in the Fraser River

Family of missing B.C. senior with dementia frustrated with situation, heartened by community support

Nine days since Grace was last seen the question remains: ‘How can an 86-year-old just disappear?’

Police ask for help locating missing men last seen in South Surrey

Jeep that Richard Scurr and Ryan Provencher were in has been located unoccupied in Logan Lake: RCMP

Islanders have new cancer screening option with $6.5 M diagnostic suite in Victoria

The Gordon Heys Family PET/CT Suite was unveiled at the BC Cancer Centre-Victoria

Unsealed record suggests U.S. man convicted of murdering Vancouver Island couple left DNA on zip tie in 1987

William Talbott is set to be sentenced Wednesday in the murders of Jay Cook and Tanya Van Cuylenborg

Okanagan Air Cadet challenges gender-exclusive haircut policy

Haircut regulation inspires challenge around gender identity

VIDEO: Bystander training gains traction as tool to prevent sexual harassment, violence

Julia Gartley was sexually assaulted after an event, and no one stepped in to help

Most Read