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.

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

Comments are closed

Just Posted

Asphalt plant can soon begin operations in Steelhead

Council votes 4-3 to permit amendment to Land Use Contract, notes legal implications

Vancouver double homicide leads to arrest in Harrison Hot Springs Wednesday

VPD and RCMP tracked dumped vehicle connected to killings to Chilliwack

Multiple accidents slowing westbound Highway 1 traffic

3 accidents in Langley, Abbotsford within 30 minutes

Thief steals bucket truck in Abbotsford while worker is 20 feet in air

Employee is able to jump to safety after suspect drives into pole

Fraser Valley Real Estate Board says sales double in June, buyers returning to market

Month’s property sales rebound 113% over May’s sales, 32% over June last year

The pandemic is widening Canada’s workplace gender gap

Gender pay gap is incentivizing fathers to work while mothers watch children, a new B.C. study has found

Canadian policing organization calls for decriminalization of simple illicit drug possession

Canadian Association of Chiefs of Police want policing focus of opioid crisis to be replaced with a health one

Surrey officer-impersonation scam continues ‘almost daily’

Police reiterate warning that demands for Bitcoin in exchange for waived charges are fraudulent

Indigenous leader Ed John pleads not guilty to historical sex charges

Ed John’s lawyer entered the plea by telephone on behalf of his client

Woman who talked to unconscious husband for 30 years gets solace from B.C. study

Ian Jordan suffered a head injury when he and another officer were on their way to a call in Victoria in September 1987

RCMP investigate threat against Indigenous totem poles on B.C.’s Sunshine Coast

Police describe the nature of the threat as ‘sensitive’

Investigation clears RCMP in incident where man fell from Langley overpass

‘Officers acted commendably and placed themselves at risk’ police watchdog report finds

Ex-Okanagan Mountie forfeits 20 days’ pay after sexual misconduct review

A former Vernon RCMP constable made sexual comments, grabbed genitals of male officer in two incidents 10 years ago

Rural Chilliwack residents asked to stay indoors, lock doors amid heavy police presence

Heavy police presence in rural Chilliwack neighbourhood as RCMP contend with ‘serious situation’

Most Read