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

Kootenay-Columbia incumbent MP responds to Trudeau brownface scandal

Stetski proud of NDP leader Singh’s reaction, which focused on people not power

Liberals’ Kootenay-Columbia candidate stands by Trudeau despite scandal

Robin Goldsbury says the prime minister’s racist photo is a learning opportunity

Canal Flats pavilion gets a financial boost

Trust provides over $1.9 million for 12 community projects

Windermere carnival this Sunday

Fundraiser event features bouncy castles, games, reptile room, laser tag, food and fun

VIDEO: B.C.’s famous cat Grandpa Mason has died

The story of the feral cat that started fostering kittens touched people around the world

Trudeau seeks meeting with Singh to apologize for blackface, brownface photos

‘I will be apologizing to him personally as a racialized Canadian,’ Trudeau said Friday

Charges stayed against Alberta RCMP officer in alleged off-duty Whistler assault

Const. Vernon Hagen instead completed an alternative measures program

VIDEO: Fire destroys Williams Lake strip club targeted by past arson attempts

Diamonds and Dust Entertainment Lounge destroyed by fire, as well as New World Tea and Coffee House

Second bat found at Greater Victoria elementary school tests positive for rabies

Island Health confirms second rabies case, this time in Saanich

B.C. man guilty of first-degree murder in Yukon killing

Edward James Penner, 22, was given the mandatory life sentence for the 2017 slaying of 25-year-old Adam Cormack

Victoria man spots online photo of his totem pole 11 years after it was stolen

Mark Trueman restored the pole himself before it was stolen off of his property in Duncan

‘I’d do it again,’ says B.C. man who swam naked, drunk in Toronto shark tank

David Weaver, of Nelson, was drunk when he went to Ripley’s Aquarium in Toronto on Oct. 12 2018

How to react to Trudeau’s racist photos? With humility, B.C. prof says

‘We are now treating racism as a crime that you cannot recover from’

Most Read