Community rallies behind Sooke boy with rare condition

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.


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kendra.wong@goldstreamgazette.com

 

Community rallies behind Sooke boy with rare condition

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)

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)