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

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Free film for Ridge residents to mark Plastic Free July

The Story of Plastic can be viewed for free on any device

Seniors tennis society of Maple Ridge looking for new members

Club accepts anyone over the age of 55 into their ranks

Maple Ridge conservation group frustrated with lack of communication by city

ARMS concerned proposed development along Alouette River will go to fourth reading

Ridge Meadows recreation re-opens

Maple Ridge fitness centre and outdoor pool re-open; Pitt Meadows opens sports fields to groups

Provincial COVID-19 data can now be used for B.C. to prepare for a second wave

In the past week, B.C. has seen a slight spike in daily test-positive case counts

B.C. records 62 new COVID-19 cases, two deaths since Friday

Province has just over 200 active cases

Hotel rooms for B.C. homeless too hasty, NDP government told

Businesses forced out, but crime goes down, minister says

Wage subsidy will be extended until December amid post-COVID reopening: Trudeau

Trudeau said the extension will ‘give greater certainty and support to businesses’

B.C. government prepares for COVID-19 economic recovery efforts

New measures after July consultation, Carole James says

COVID-19 exposure on Vancouver flight

The Air Canada 8421 flight travelled from Kelowna to Vancouver on July 6

Double homicide investigation leads Vancouver police to Chilliwack

A VPD forensics unit was in Chilliwack Saturday collecting evidence connected to East Van murders

VIDEO: Former Abbotsford resident giving away $1,000

Langley native Alex Johnson creates elaborate treasure hunt to give away cash

Tree planters get help with COVID-19 protective measures

Ottawa funds extra transportation, sanitizing for crews

UPDATE: Abbotsford shooting victim was alleged ‘crime boss,’ according to court documents

Jazzy Sran, 43, was believed to have been smuggling cocaine across the border

Most Read