Six-year-old boy needs $19,000 a month to treat rare form of arthritis

Six-year-old boy needs $19,000 a month to treat rare form of arthritis

Mother of sick Sooke boy asks government to help fund treatments

It was only months ago when six-year-old Landen Alexa was racing his bike around the Sooke Bike Park with his friends. Today, he can’t even sit through a day at school without coming home in excruciating pain.

At the end of May, Landen was participating in his school’s Jump Rope for Heart fundraiser when he came home complaining of a sore ankle.

Landen’s mother, Jillian Lanthier, took him in to Victoria General Hospital where he was and sent on his way with some Tylenol, believing it was only a sprain.

“I’m a mother of four,” said Lanthier. “So to me a sprained ankle was very minor. Little did we know it was the start of something much more serious.”

That weekend, Landen was left with his grandparents to heal his ankle, while Lanthier took her other three children away camping. On Sunday, Lanthier received a call from the grandparents saying Landen was very ill and needed to go to the hospital.

Lanthier rushed home thinking it was his ankle acting up, only to find her son bedridden with a fever of 103 degrees, and was in so much pain that he couldn’t move any part of his body.

When they arrived at the hospital, Landen’s state declined, and his body began to twitch. Nurses told Lathier that something was very wrong and he was admitted to the acute emergency.

After 10 days and multiple tests, no doctor could find out what was wrong with Landen. They checked for multiple diseases such as leukemia, lymphoma, and blood infections, but still, nothing.

“Looking back and don’t know how we survived those days,” said Lanthier. “No one could give us any answers.”

Finally on June 14, Landen was diagnosed with Systemic Juvinile Idiopathic Arthrits (SJIA), a disease that causes his body to attack itself, leaving him with crippling muscle and joint pain and with virtually no immune system. The disease is so severe, even a common head cold can be potentially fatal for him.

Landen was given a dose of chemo, and was in and out of the hospital every 18 hours for pain management.

Today, he goes to the hospital every two weeks 10 to 14 days for IV treatment, and takes medication daily from home.

“Our life is now planned around the hospital schedule. I wish that for nobody, let alone a child, who I feel was robbed by this disease,” said Lanthier.

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 Lanthier $19,000 a month, as it is not covered by B.C. Pharmacare.

The medicine could greatly improve Landen’s quality of life, helping with pain and allowing him to make a lot less hospital trips.

There are only approximately 10 children in B.C. who are battling the same disease as Landen.

Jennifer Wilson, executive director at Cassie and Friends, a charity dedicated to helping children with juvenile arthritis, has started a petition hoping to get the B.C. Health Ministry to fund children with SJIA on a case-by-case basis.

“We aren’t asking for a blank cheque. There are only 10 kids right now, who won’t have any quality of life and will be an even bigger burden on the health-care system in the long run if they don’t receive the drug,” said Wilson.

She explained that the drug is costly because of how rare it is, there is no competition between pharmaceutical companies and it is expensive to test and make.

“I never expected that in Canada I would have an expense this big for medicine,” said Lanthier. “This is not something I can afford and I don’t think it’s something a lot of people could.”

Lanthier has reached out to both Premier John Horgan and Prime Minister Justin Trudeau, and has received responses of sympathy from both.

“I am not a person that likes to ask for help, but I am desperate. There is no other option,” said Lanthier. “I’m going to fight for my son.”

To sign the petition to help convince the Health Ministry to fund cases like Landen’s, visit change.org.

Just Posted

B.C. Finance Minister Selina Robinson outlines the province’s three-year budget in Victoria, April 20, 2021. (B.C. government video)
B.C. deficit to grow by $19 billion for COVID-19 recovery spending

Pandemic-year deficit $5 billion lower than forecast

Victoria’s economy is expected to bounce back fairly easily, according to a new report from BMO Capital Markets released April 15. (Black Press Media file photo)
Victoria in good position to bounce back post-pandemic, says BMO

City’s smaller size, lower COVID-19 caseload and diverse industry base bode well

Police executed a search warrant at the Devils Army Clubhouse on Petersen road in Campbell River on August 10, 2017.
Murder trial into 2016 Campbell River killing underway in Victoria

Ricky Alexander is charged with the first-degree murder of John Dillon Brown

Alex Mah of Chemainus spends a sunny day at Kin Beach reading to daughter Beatrice Mah. 3. (Photo by Don Bodger)
Vancouver Island’s mini-summer poised to fade

Cooler and damper this weekend, summer-like conditions not likely to return until late June

University of Victoria rowing coach Barney Williams is photographed in the stands during the Greater Victoria Invitational at CARSA Performance Gym at the University of Victoria in Victoria, B.C., on Friday, November 29, 2019. The University of Victoria says Williams has resigned effective immediately. (THE CANADIAN PRESS/Chad Hipolito)
University of Victoria women’s rowing coach resigns by mutual agreement

Lawsuit filed last summer accused Barney Williams of verbal abuse

FILE – NDP Leader John Horgan, right, and local candidate Mike Farnworth greet one another with an elbow bump during a campaign stop in Coquitlam, B.C., on Friday, September 25, 2020. THE CANADIAN PRESS/Darryl Dyck
B.C. won’t be using random individual road stops to enforce travel rules: Safety Minister

Minister Mike Farnworth says travel checks only being considered at major highway junctions, ferry ports

A man pauses at a coffin after carrying it during a memorial march to remember victims of overdose deaths in Vancouver. THE CANADIAN PRESS/Darryl Dyck
B.C. announces historic half-billion-dollar funding for overdose crisis, mental health

Of it, $152 million will be used to address the opioid crisis and see the creation of 195 new substance use treatment beds

Children’s backpacks and shoes are seen at a CEFA (Core Education and Fine Arts) Early Learning daycare franchise, in Langley, B.C., on Tuesday May 29, 2018. THE CANADIAN PRESS/Darryl Dyck
B.C. budget to expand $10-a-day child care, but misses the mark on ‘truly universal’ system

$111 million will be used to fund 3,750 new $10-a-day spaces though 75 additional ChildCareBC universal prototype sites over the next three years.

Ambulance paramedic in full protective gear works outside Lion’s Gate Hospital, March 23, 2020. Hospitals are seeing record numbers of COVID-19 patients more than a year into the pandemic. (The Canadian Press)
B.C.’s COVID-19 infection rate declines, 849 cases Tuesday

Up to 456 people now in hospital, 148 in intensive care

Christy Clark, who was premier from 2011 to 2017, is the first of several present and past politicians to appear this month before the Cullen Commission, which is investigating the causes and impact of B.C.’s money-laundering problem over the past decade. (Darryl Dyck/Canadian Press)
Christy Clark says she first learned of money-laundering spike in 2015

The former B.C. premier testified Tuesday she was concerned the problem was ‘apparently at an all-time high’

Victoria police arrested three men following a double stabbing April 19. The two victims suffered non-life-threatening injuries. (Black Press Media file photo)
Three arrested after double stabbing in Victoria

Two people sent to hospital after being stabbed, hit with bear spray

A convicted sex offender, whose crimes included offences against children, was arrested at Gonzales Beach after the man was spotted by an off-duty officer. (Black Press Media file photo)
Convicted sex offender arrested at Gonzales Beach

After committing crimes involving children, offender barred from public beaches, being in proximity to kids

Most Read