Charleigh Fales

Province comes through with funding for Charleigh Fales

Lake Cowichan toddler only one in B.C. diagnosed with CLN2 Batten disease

Lake Cowichan’s Fales family feels like they’ve been thrown a life line.

Jori Fales said the family has been informed that the province has agreed to step in and pay for her three-year-old daughter Charleigh’s expensive treatment for CLN2 Batten disease, an extremely rare fatal genetic disorder.

The new enzyme replacement gene therapy called Brineura, that is considered critical to help slow down Charleigh’s rapid deterioration until, hopefully, one day there is a cure costs up to $750,000 per year.

RELATED STORY: LAKE COWICHAN FAMILY SEEKS HELP FOR DAUGHTER STRUCK WITH RARE DISEASE

Jori said the family applied for the funding from the Ministry of Health just a few weeks ago, and she was delighted to receive a positive response so soon.

“The application process usually takes a lot longer, but everyone knew that this is a very serious case and time is not on our side,” she said.

“Charleigh is the only one diagnosed with the disease in the province so we’re extremely grateful that this funding came through. The funding will cover the costs of the medication that is needed, but we’re still responsible for all the other expenses that we will incur.”

Officials from the Ministry of Health couldn’t be reached by press time.

Charleigh is just one of 11 in Canada with the disease and there are less than 500 cases worldwide.

Most children diagnosed with the disease will die between the ages of six and 12 years old.

Jori said Charleigh still faces some hurdles before her treatment can begin, including brain surgery in the coming days to prepare to place an infusion tube in her head so the enzyme can be administered straight to the brain.

She said a team from the company in Ohio that makes the enzyme replacement gene also has to be flown in to teach the medical staff at the B.C. Children’s Hospital in Vancouver how to administer it to Charleigh.

“Charleigh will have to have an infusion every 14 day so we’ll pretty much end up living in and around hospitals for some time,” she said.

“The enzyne has shown great result in other patients so we’re hoping Charleigh’s body will accept the enzyme. We’re hopfully looking forward to some progess for a change instead of the steady regression that Chaleigh has been experiencing. We feel that we’re at the beginning of a long journey.”

FOR MORE INFORMATION: CLICK HERE

In the meantime, the family, friends and the community have been stepping up to help the Fales family.

In just over two weeks, the GoFundMe page set up to raise funds to help the family deal with its many expenses while they deal with their three year-old daughter Charleigh’s medical condition, which can be found at www.gofundme.com/charleighsjourney, has raised $73,000 of the $100,000 goal.

The funding from the GoFundMe page will help the family pay for what will likely be countless trips to B.C Children’s Hospital from the Cowichan Valley, medical expenses, loss of wages and Charleigh will need her parents full-time support for life now.

Jori said people have also been bringing food and meals to her home to assist.

“I’m surprised, but not really surprised, at the response the family has been getting,” she said.

“There’s so many good people out there.”

Jori said a documentary filmmaking team from Toronto has produced a short film about Charleigh and her unique medical condition that is expected to be released this week.

She said she will post the film online to raise awareness of Batten disease and to advocate for people to have access to treatment.



robert.barron@cowichanvalleycitizen.com

Like us on Facebook and follow us on Twitter

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

Just Posted

Victoria mayor wants newspaper boxes removed from downtown streets

Mayor Lisa Helps says the boxes are not needed, often filled with garbage

Esquimalt artists take to great outdoors amid coronavirus

Group invites budding, or just willing artists, to join at Saxe Point

Langford firefighters raise $1,065 for Burn Camp

B.C. firefighters and burn survivors raise $200,068 this year for Burn Camp

Victoria church to ring bells for 75th anniversary of atomic bombings

Bells expected at 8:15 a.m. on Aug. 6 and 11:50 a.m. on Aug. 9

VicPD find used, uncapped needle tied to handrail in Beacon Hill Park

Officers believe the needle was put there with the intent to harm someone

VIDEO: Otter pups learn to swim at B.C. wildlife rescue facility

Watch Critter Care’s Nathan Wagstaffe help seven young otters go for their first dip

Plane crashes into Nelson supermarket parking lot

Pilot and passenger have minor injuries

SOOKE HISTORY: A peek into the journal of John George Whiffin

Elida Peers | Contributed One of our most popular walks is on… Continue reading

Michael Buble among 13 British Columbians to receive Order of B.C.

Ceremony will be delayed to 2021 due to COVID-19

U.S. border communities feel loss of Canadian tourists, shoppers and friends

Restrictions on non-essential travel across the Canada-U.S. border have been in place since March 2`

Rollout of COVID-19 Alert app faces criticism over accessibility

App requires users to have Apple or Android phones made in the last five years, and a relatively new operating system

Alleged impaired driver sparks small wildfire near Lytton after crash: B.C. RCMP

Good Samaritans prevented the blaze from getting out of control

B.C. First Nation adopts ‘digital twinning’ software to better manage territory

Software allows users to visualize what a mountain might look like if the trees on its slopes were logged

Most Read