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

Mount Washington opening for winter season this weekend

The resort’s original opening day was delayed due to lack of snow

IIO doesn’t recommend charges after motorcyclist death in Mill Bay

An off-duty VicPD officer was involved in the crash

New wind warning for most of Vancouver Island

Forecasters are calling for strong winds up to 90km/h for some areas

Two boats reported in trouble in Cowoichan Bay on Dec. 13

Coast Guard responds, but finds only one vessel that required assistance

VIDEO: Kitten rescued from under school bus in Duncan

School staff have affectionately called kitten “Axle”

Trudeau to make it harder for future PM to reverse Senate reforms

Of the 105 current senators, 54 are now independents who have banded together in Independent Senators’ Group

B.C. VIEWS: Andrew Wilkinson on taxes, ICBC and union changes

Opposition leader sees unpredictable year ahead in 2019

5 tips for self-care, mental wellness this holiday season

Ministry of Mental Health and Addictions urging British Columbians to prioritize self care through festive season

Rescued B.C. cat with misshapen legs in need of forever home – with carpet

Mirielle was born with misshapen back legs and after a tough life on the streets, is looking for a forever home.

VIDEO: Craft growers will add to recreational market, cannabis producer says

Two B.C. men say their expertise in running small legal medical grow-ops a benefit to recreational market

World Sikh Organization demands Canada prove Sikh extremism is a threat

Sikh community says this is first time such extremism has been mentioned in federal terror-threat assessment

Risk of catching the flu increasing in B.C. this holiday season: BCCDC

Dr. Danuta Skowronski with the BC Centre for Disease Control says influenza will pick up during the holidays

Boeser has 2 points as Canucks ground Flyers 5-1

WATCH: Vancouver has little trouble with slumping Philly side

Driver unharmed in high-speed rollover crash on highway south of Nanaimo

Jeep and minivan involved in collision near Nanaimo River Road

Most Read