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

‘ALR golf courses should return to farming,’ says ex-ALC chair Frank Leonard

Former mayor says Saanich could appeal Cedar Hill Golf Course application

Sidney fundraiser helping kids fight diabetes

Nicola Politano organizing May 26 dance at the air cadet hall

Saanich taking heat over process surrounding Haro Woods

District delays decision on the future of cycling in popular Saanich park

Victoria mayor hopes ninth attempt to redesign Ship Point will go through

Revised master plan for waterfront site includes plazas, festival piers and more

Young mother’s death leaves gaping hole in Saanich family

Father and three young children can’t access GoFundMe account established in mother’s name

VIDEO: Grand Forks shores up defences as floodwaters rise to peak levels

Canadian Forces, volunteers working to protect low-lying areas

Royal Oak loses Canada Post outlet

Potal outlet in Country Grocer closed after nearly two decades, service handled by other locations

Watch: Saved from highway harm, ducklings waddle into Swan Lake

Saanich Pound rescue, release ducklings in cute video

175 evacuation orders lifted as floods recede in Grand Forks

Officials hope to have all 3,000 people back in their homes by Monday night

B.C. VIEWS: Making sense of climate policy

Flood and fire predictions have poor track record so far

Whitecaps rally for 2-2 draw with FC Dallas

Vancouver climbed out of a two-nil hole to tie FC Dallas 2-2

Searchers for Vancouver Island father turn focus to Cowichan River

Cowichan SAR joined by many other SAR groups, volunteers now determined to find missing man

VIDEO: As floodwaters recede, crews assess the damage to Grand Forks’ downtown

More than four dozen firefighters and building inspectors came out to help

LETTER: Dog poop on school grounds has Cordova Bay Grade 3s looking for answers

We are Grade 3 students at Cordova Bay School. We have noticed… Continue reading

Most Read