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.

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

Just Posted

A health-care worker prepares a dose of the Pfizer-BioNTech COVID-19 vaccine at a UHN COVID-19 vaccine clinic in Toronto on Thursday, January 7, 2021. THE CANADIAN PRESS/Nathan Denette
253 new COVID-19 cases, 4 more deaths in Interior Health over the weekend

More than 1,000 cases in the region remain active

An Abbotsford man was killed in a motor vehicle accident on Highway 3 on Monday, Jan. 18. (Black Press file photo)
Abbotsford man killed in Highway 3 single vehicle crash near Hedley

Fatality was discovered by passing tow truck driver

(Black Press file photo)
Highway 3 cleared, open after vehicle incident

The road was closed for about three hours earlier on Jan. 18

Justin Kripps of Summerland and his team have competed in Olympic action and World Cup competitions in bobsleigh. (Jason Ransom-Canadian Olympic Comittee).
QUIZ: Are you ready for some winter sports?

It’s cold outside, but there are plenty of recreation opportunities in the winter months

A map released by the BCCDC on Jan. 15 shows the number of new COVID-19 cases reported for each local health area between Jan. 3 and 9. (BCCDC Image)
Salmon Arm and Vernon see increase in new COVID cases, curve flattening elsewhere

The rate of new cases is levelling off in Kelowna, Penticton and Revelstoke.

Provincial health officer Dr. Bonnie Henry prepares a daily update on the coronavirus pandemic, April 21, 2020. (B.C. Government)
B.C. adjusts COVID-19 vaccine rollout for delivery slowdown

Daily cases decline over weekend, 31 more deaths

Interior Health confirms vaccination of priority populations has begun in Salmon Arm. THE CANADIAN PRESS/Nathan Denette
COVID-19 vaccinations underway in Salmon Arm

Interior Health confirms vaccination of priority populations has begun

This is the location, 3240 Skaha Lake Road, of where BC Housing plans to build a four storey supportive housing project for the homeless and at risk of being homeless. (Jesse Day Western News)
Penticton mayor and MLA concerned about new BC Housing project

‘Penticton already has its fair share’ of BC Housing projects

Interior Health declared the COVID-19 outbreak at McKinney Place long term care home over Monday, Jan. 18, 2020. (File photo)
COVID-19 outbreak at McKinney Place care home declared over

‘This has been one of our most challenging outbreaks so far,’ says chief medical health officer

Penticton Bylaw officer Glenn Smith, as well as resident Zak Laycock (not pictured), received the Governor General Award from the Royal Canadian Humane Association to recognize their heroism in a summer 2019 incident. (Contributed)
Bylaw officer and Penticton resident given awards for intervening in sexual assault

Bylaw officer Glenn Smith said he was simply in the right place at the right time

Sunnybank
COVID-19 related deaths at Oliver, West Kelowna and Vernon senior care homes

Sunnybank, Heritage Retirement Residence and Noric House recorded deaths over the weekend

Hillview Elementary students Emma Li and Mina Nadeau were awarded by the Premier’s office for winning the annual holiday card contest. (Karen Rogers photo)
North Okanagan students’ art featured on Premier’s cards

Hillview youth chosen for annual holiday card contest

A female prisoner sent Langford police officers a thank-you card after she spent days in their custody. (Twitter/West Shore RCMP)
Woman gives Victoria-area jail 4.5-star review in handwritten card to police after arrest

‘We don’t often get thank you cards from people who stay with us, but this was sure nice to see’: RCMP

An elk got his antlers caught up in a zip line in Youbou over the weekend. (Conservation Officer Service Photo)
Elk rescued from zip line in Youbou on Vancouver Island

Officials urge people to manage items on their property that can hurt animals

Most Read