Community rallies behind Sooke boy with rare condition

Dozens called on government to cover cost of drug for six-year-old Landen Alexa

The Greater Victoria community is rallying behind a young Sooke boy who has been denied coverage of a drug that will drastically improve his quality of life.

Dozen of parents and children gathered outside Premier John Horgan’s MLA office in Langford in support of six-year-old Landen Alexa on Monday. Chants of “Love for Landen” and “Don’t abandon Landen” could be heard from the corner of Jacklin Road and Lequesne Avenue, as the crowd called on the provincial government to fund a drug called Ilarus, which would drastically improve Landen’s quality of life.

“We came here today to support Jillian and Landen. We feel that Pharmacare isn’t being fair in their decision in helping Landen with the disease he has,” said Sunni Anthony, who brought her three-year-old son Finlay to the rally.

“It’s an expensive medication that nobody can afford. Every child has a right to a normal life.”

RELATED: Sooke boy denied $19,000 per month drug for third time

In June 2017, Landen was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA), a disease that causes his body to attack itself, leaving him with crippling muscle and joint pain and with virtually no immune system.

However, his current medicine is no longer working effectively, and the only option for treatment is a drug called Ilarus, which is going to cost $19,000 a month, as it is not covered by B.C. Pharmacare.

RELATED: Six-year-old Sooke boy needs $19,000 a month to treat rare form of arthritis

The show of support brought tears to Landen’s mother Jillian Lanthier’s eyes.

“I hope this brings attention to Landen’s case and I hope we can sit down with Adrian Dix or John Horgan and discuss Landen’s case,” she said.

Landen even made an appearance at the rally, sporting a Mighty Ducks jersey.

There are only approximately 10 children in B.C. who are battling the same disease.


Like us on Facebook and follow us on Twitter

kendra.wong@goldstreamgazette.com

 

In June 2017, Sooke resident Landen Alexa was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA), a disease that causes his body to attack itself, leaving him with crippling muscle and joint pain and with virtually no immune system. (Kendra Wong/News Gazette staff)

Just Posted

VicPD warn public on fake firearms after responding to four gun calls in just five hours

Officers treat each firearm as a real weapon until they can determine it isn’t, say police

In a fight against cancer, Victoria man’s only stem cell match was his own donation

More mixed race and Asian stem cell donors needed, says Victoria family

Bridges for Women grad takes on new business idea

Victoria woman puts her lessons into action with Sweeping Beauty Concierge

Howard the Gnome finds a home at Galey Farms

Eight-metre gnome expected to greet visitors to Saanich farm this fall

Purple Day 2019: Victoria marks epilepsy awareness day

1 in 100 Canadians live with epilepsy, a neurological disorder with many symptoms

VIDEO: 13-year-old killed in B.C. crash that involved five kids

The children range in age from six to 17.

POLL: Do you still have a landline telephone?

With smart phones becoming an indispensable part of modern-day life, more and… Continue reading

Greater Victoria Wanted List for the week of March 26

Greater Victoria Crime Stoppers is seeking the public’s help in locating the… Continue reading

MPs denounce leaked reports of Trudeau-JWR clash over Supreme Court pick

Opposition MPs called the leaks an act of desperation meant to smear Wilson-Raybould

Study says B.C.’s housing policies mean drug users can be targeted for eviction

The study involves 50 people living in Vancouver’s Downtown Eastside

VIDEO: Homicide team called in after three killed in Surrey car crash

Investigators ask public to come forward with information, dashcam video

Stranger climbs onto B.C. family’s second-floor balcony, lights fire in barbecue

Incident in Abbotsford terrifies family with two-year-old boy

UPDATED: Sailings resume after BC Ferries boat hits Langdale terminal

The Queen of Surrey is stuck on the dock, causing delays to Horseshoe Bay trips

Eviction halted for B.C. woman deemed ‘too young’ for seniors’ home

Zoe Nagler, 46, had been given notice after living in the seniors complex in Comox for six years

Most Read