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.


Like us on Facebook and follow us on Twitter

kendra.wong@goldstreamgazette.com

Get local stories you won't find anywhere else right to your inbox.
Sign up here

 

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)

Just Posted

Island Health has confirmed the first long term care facility outbreak in Greater Victoria at Veterans Memorial Lodge in Saanich. (Google Maps)
Island Health records first long-term care COVID outbreak in Greater Victoria

Veterans Memorial Lodge in Saanich confirms one positive staff member

Itty, a Siamese cat, has been missing since a house fire in Victoria’s Fernwood neighbourhood on Friday, Nov. 27. Her owner says she has white fur with blonde and grey markings. (Facebook/ROAM)
Cat goes missing after house fire in Fernwood neighbourhood

‘Itty’ has white fur, blonde and grey markings and blue eyes

An aerial view over Oak Bay. (Black Press Media File Photo)
An aerial view over Oak Bay and the Marina. Oak Bay residents pay the highest taxes on Vancouver Island. Don Denton/Black Press
Oak Bay secondary suites study considers units old and new

Secondary suites draft report due in new year

Westcoast Impressions plans to organize a COVID-19 friendly version of the event in 2021 at the Mary Winspear Centre after having cancelled the 2020 version against the backdrop of pandemic. The opening night of the 2019 Sidney Street Market featured more than 150 vendors lined along Beacon Avenue. (Black Press Media file photo)
Sidney Street Market plans for 2021 return at Mary Winspear Centre

Tentative plan calls for the event’s return to Beacon Avenue after COVID-19 pandemic

(Dave Landine/Facebook)
VIDEO: Dashcam captures head-on crash between snowplow and truck on northern B.C. highway

Driver posted to social media that he walked away largely unscathed

Black Press Media and BraveFace have come together to support children facing life-threatening conditions. Net proceeds from these washable, reusable, three-layer masks go to Make-A-Wish Foundation BC & Yukon.
Put on a BraveFace: Help make children’s wishes come true

Black Press Media, BraveFace host mask fundraiser for Make-A-Wish Foundation

A B.C. Ambulance Service paramedic wearing a face mask to curb the spread of COVID-19 moves a stretcher outside an ambulance at Royal Columbia Hospital, in New Westminster, B.C., on Sunday, November 29, 2020. THE CANADIAN PRESS/Darryl Dyck
Top doctor urges Canadians to limit gatherings as ‘deeply concerning’ outbreaks continue

Canada’s active cases currently stand at 63,835, compared to 53,907 a week prior

A Canadian Pacific freight train travels around Morant’s Curve near Lake Louise, Alta., on Monday, Dec. 1, 2014. A study looking at 646 wildlife deaths along the railway tracks in Banff and Yoho national parks in Alberta and British Columbia has found that train speed is one of the biggest factors. THE CANADIAN PRESS/Frank Gunn
Study finds train speed a top factor in wildlife deaths in Banff, Yoho national parks

Research concludes effective mitigation could address train speed and ability of wildlife to see trains

A airport worker is pictured at Vancouver International Airport in Richmond, B.C. Wednesday, March 18, 2020. THE CANADIAN PRESS/Jonathan Hayward
Canada extends COVID restrictions for non-U.S. travellers until Jan. 21 amid second wave

This ban is separate from the one restricting non-essential U.S. travel

Menno Place. (Google Street View image.)
B.C. care home looks to hire residents’ family members amid COVID-19-related staff shortage

Family would get paid as temporary workers, while having chance to see loved ones while wearing PPE

A man walks by a COVID-19 test pod at the Vancouver airport in this undated handout photo. A study has launched to investigate the safest and most efficient way to rapidly test for COVID-19 in people taking off from the Vancouver airport. The airport authority says the study that got underway Friday at WestJet’s domestic check-in area is the first of its kind in Canada. THE CANADIAN PRESS/HO, Vancouver Airport Authority *MANDATORY CREDIT*
COVID-19 rapid test study launches at Vancouver airport for departing passengers

Airport authority says that a positive rapid test result does not constitute a medical diagnosis for COVID-19

A small crash in the water south of Courtenay Saturday afternoon. Two men had to be rescued, but reports indicate there were no serious injuries. Photo by Mike Chouinard
Small plane crash in Comox Valley waters Saturday afternoon

Two rescued from plane that had flipped in water; no serious injuries reported

A photo from 2017, of Nuchatlaht First Nation members outside court after filing a land title case in B.C. ( Submitted photo/Nuchatlaht First Nation).
Vancouver Island First Nation calls on B.C. to honour UNDRIP in historic title case

Nuchatlaht First Nation says Crown counsel continues to stall the case using the ‘distasteful’ argument that the Nation ‘abandoned’ their land

Most Read