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

WATCH: Moms Stop The Harm respond to opioid crisis

Someone asked her if she does the work for her son. McBain said: “No, actually. I do it for your son.”

Bike dragged several blocks after hit and run

Wheel-less bike dragged underneath van along Dallas Rd. after cyclist hit

Man arrested at gunpoint outside Vic High

Police were called after he allegedly threatened a teacher with a knife

Skydiver lands safely after cutting away main chute

Central Saanich emergency services called after witnesses saw spiralling chute

Millstream Road closed to traffic at Bear Mountain Parkway

Downed hydro pole blocking both lanes at Industrial Way

WATCH: Officers recognized at 10th anniversary of anti-impaired driving program

Alexa’s Team has grown from 26 members in 2008 to the current 2,400

NAFTA talks hold Foreign Affairs Minister in Washington, substitute heads to NATO summit

NAFTA talks keeping Foreign Affairs Minister Chrystia Freeland, sends substitute to NATO summit

Greater Victoria wanted list for the week of April 24

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

Britain gives long-lost Franklin expedition ships to Canada, Inuit

Deeds to HMS Erebus and HMS Terror signed over to Canada and Inuit Heritage Trust

Grief over deadly Toronto van attack sinks in

Three days after rampage, people still gathering at memorial to lay flowers and honour victims

Liberals urged to tax e-commerce services like Netflix

Trudeau has been adamant that his government wouldn’t increase taxes on online subscriptions

Why some B.C. daycares didn’t opt in to subsidy program

Deadline passes for program aimed at laying foundation for universal child care

Charges follow collisions between pickup and police vehicles in Nanaimo

Majore Jackson, 32, and Andrew John Bellwood, 47, from Nanaimo, face numerous charges

Most Read