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

Weekend revellers keep Sooke police busy

Mounties respond to 68 calls for service

Supreme Court rules residents in Victoria social housing deserve tenant rights

Tenants trying to stabilize their living situations should not face less legal rights than those paying market rates: Judge

Weapons and drugs could lead to 29 charges against Victoria man

VicPD found a cache of weapons, drugs and counterfeit money

Oak Bay set to turn up the heat on beach picnics

Committee of the whole makes unanimous recommendation to allow portable bbqs at local beaches

Victoria Cool Aid Society invites you to their Homecoming

Event celebrates 50 years of social services across Greater Victoria with fundraiser to keep programs running

Film Review: On Chesil Beach

Saoirse Ronan continues to shine in adaptation Ian McEwan novel about young newlyweds on their wedding day

Police release video on how to ‘run, hide, fight’ if there’s an active shooter

Vancouver police offer video with input from E-Comm, BC EHS, Vancouver Fire and Rescue

RCMP caution boaters after two kids pass out from carbon monoxide poisoning

Both children were given oxygen and taken to hospital

B.C. invests $115M to create 200 new nurse practitioner jobs

Health Minister says 780,000 B.C. residents don’t have a family doctor

Union calls on prime minister to step into ‘stalled’ Phoenix compensation talks

For more than two years, thousands of federal workers have been affected by Phoenix system

Judge: President Trump can’t block critics on Twitter

The judge had suggested that Trump mute rather than block some of his critics

NFL owners adopt new policy to address anthem protests

Commissioner Roger Goodell said the change was approved unanimously by owners

Film Review: On Chesil Beach

Saoirse Ronan continues to shine in adaptation Ian McEwan novel about young newlyweds on their wedding day

Unicyclist starts his cross-Canada trip in Vancouver

Taylor Stark started his journey May 7

Most Read