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

UFV baseball coach returns to pro ranks

Jordan Lennerton, who also coaches at ‘The Yard’ in Chilliwack, played 1 game for the Quebec Capitales

Camp Ignite aims to inspire future first responders

Four-day camp offers young women a chance to experience the challenges of being a first responder

General aviation traffic down to a trickle at Chilliwack Airport

Minimum visibility guidelines can’t be met when conditions are so smoky you can’t see the mountains

At least 14 illegal fires set between Chilliwack and Hope this month

Conservation officers are fed up with people not listening to the province-wide fire ban

Surging Valley Huskers stun Okanagan Sun

The perenial doormat Huskers beat the perenial powerhouse Sun 22-18 in Chilliwack Saturday night.

Social media, digital photography allow millennials to flock to birdwatching

More young people are flocking to birdwatching than ever, aided by social media, digital photography

Former Trump aide Paul Manafort found guilty of eight charges

A mistrial has been declared for the other 10 charges against him

Canada’s team chasing elusive gold medal at women’s baseball World Cup

Canada, ranked No. 2 behind Japan, opens play Wednesday against No. 10 Hong Kong

Lower Mainland animals feeling effects of smoky skies

Animal shelters are trying to keep their critters healthy through the smoggy days.

Former B.C. detective gets 20 months in jail for kissing teen witnesses

James Fisher, formerly with Vancouver police department, pleaded guilty to three charges in June

Former B.C. premier Christy Clark criticizes feds for buying pipeline

The $4.5 billion purchase of Kinder Morgan’s Trans Mountain pipeline second worst decision, she said

‘Takes more courage to fail’: B.C. ultra-marathon swimmer reflects on cancelled try at record

Susan Simmons halted her swim from Victoria to Port Angeles and back because of hypothermia

Animals moved from B.C. Interior shelters to make way for pets displaced by wildfires

The Maple Ridge SPCA houses animals to make space for pets evacuated from B.C.’s burning interior.

$21.5 million medical pot plant to be built in B.C.

The facility is to be built in Princeton

Most Read