Six-year-old Sooke boy needs $19,000 a month to treat rare form of arthritis

Six-year-old Sooke boy needs $19,000 a month to treat rare form of arthritis

Mother of sick 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 given an x-ray and sent home 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 Juvenile Idiopathic Arthritis (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

February 17, 2021 - Kaelyn (L) and Costin Campbell are Goldstream News Gazette 2021 Local Heroes.
Pint-sized duo inspires others to be green

Costin and Kaelyn Campbell are this year’s Environmental Heroes

Erin Oldman received a scholarship through Royal Roads University (RRU), called the Legacy Award, which is given out once every five years. Oldman graduated from RRU with a Masters of Arts in Human Security and Peacebuilding, and is using the award to establish a charity called International Humanitarian Assessments, which helps people in war-torn areas of the Middle East. (Photo contributed by Erin Oldman)
Royal Roads University graduate receives $25,000 award

Erin Oldman will use the award to establish a charity in the Middle East

Sandy Carmichael is a Goldstream Gazette 2021 Local Hero as Seniors’ Champion. (Don Denton/Black Press Media)
Worker bee returns to volunteer: Sandy Carmichael a fixture at Langford Royal Canadian Legion

Sandy Carmichael is the 2021 recipient of the Seniors’ Champion Award

SD 62 (Sooke) has announced a COVID-19 exposure at David Cameron Elementary in Colwood. Potential exposure dates are Monday, Feb. 22; Tuesday, Feb. 23; and Wednesday, Feb. 24. (Black Press Media File).
COVID-19 exposure at Colwood’s David Cameron Elementary

Potential exposure dates are Monday, Feb. 22; Tuesday, Feb. 23; and Wednesday, Feb. 24.

Central Saanich has received funding for a new multi-use pathway that promises to improve access to Butchart Gardens. (Black Press Media File)
Central Saanich receives grant for multi-use pathway to Butchart Gardens

Province funds entirety of $322,800 project through economic recovery grant program

A health worker holds a vial of AstraZeneca vaccine to be administered to members of the police at a COVID-19 vaccination center in Mainz, Germany, Thursday, Feb. 25, 2021. The federal state of Rhineland-Palatinate, start with the vaccination of police officers in internal police vaccination centers. (Andreas Arnold/dpa via AP)
B.C. officials to unveil new details of COVID vaccination plan Monday

Seniors and health-care workers who haven’t gotten their shot are next on the list

Lone orca from a pod that made its way north from Georgia Strait and into Discovery Passage on Saturday, Feb. 27, 2021. Photo by Ella Smiley/<a href="https://www.facebook.com/Comoxvalleywildlifesightings/?ref=page_internal" target="_blank">Comox Valley Wildlife Sightings </a>
Island wildlife viewers thrilled by close view of passing Orca pod

Group gives wildlife photographers a classic oportunity to view them off Campbell River shoreline

An investigation is underway after a man was shot and killed by Tofino RCMP in Opitsaht. (Black Press Media file photo)
Man shot and killed by RCMP near Tofino, police watchdog investigating

Investigation underway by Independent Investigations Office of British Columbia.

B.C. Supreme Court in Vancouver on Tuesday December 11, 2018. THE CANADIAN PRESS/Darryl Dyck
B.C.’s compromise on in-person worship at three churches called ‘absolutely unacceptable’

Would allow outdoor services of 25 or less by Langley, Abbotsford and Chilliwack churches

Baldy Mountain Resort was shut down on Saturday after a fatal workplace accident. (Baldy Mountain picture)
Jasmine and Gwen Donaldson are part of the CAT team working to reduce stigma for marginalized groups in Campbell River. Photo by Marc Kitteringham, Campbell River Mirror
Jasmine’s story: Stigma can be the hardest hurdle for those overcoming addiction

Recovering B.C. addict says welcome, connection and community key for rebuilding after drug habit

A Vancouver restaurant owner was found guilty of violating B.C.’s Human Rights Code by discriminating against customers on the basis of their race. (Pixabay)
Vancouver restaurant owner ordered to pay $4,000 to customers after racist remark

Referring to patrons as ‘you Arabs’ constitutes discrimination under B.C.’s Human Rights Code, ruling deems

Dasher is back home with mom Christine Girvin thanks to some help from BC Ferries staff. Photo supplied
The cat came back, with help from BC Ferries staff

After Dasher made a dash, staff in Comox found her and got her home safe

Nanaimo children’s author and illustrator Lindsay Ford’s latest book is ‘Science Girl.’ (Photo courtesy Lindsay Ford)
B.C. children’s writer encourages girls to pursue the sciences in new book

Lindsay Ford is holding a virtual launch for latest book, ‘Science Girl’

Most Read