Charleigh Fales

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

Forty-two residential properties in Oak Bay were assessed the speculation and vacancy tax in 2019 for a total of $693,000. (Travis Paterson/News Staff)
74 Oak Bay property owners paid $693,000 in spec tax

42 properties were assessed with the SVT in 2019

Staff at Artemis Place Secondary were shocked to find that one of the student-built greenhouses on the campus was stolen overnight on Jan. 11. (Artemis Place Society/Facebook)
Saanich school hopes to catch greenhouse thief red-handed

Student-built greenhouses stolen from Artemis Place Secondary on Jan. 11

Rendering shows murals decorating the proposed tiny home community in the Caledonia/Vancouver street parking lot next to Royal Athletic Park. (Courtesy Aryze Developments)
Tiny homes project on Victoria parking lot gets boost from council

Shipping container neighbourhood stems from Aryze Development idea

Jail cell - Reporter file photo
Two of Greater Victoria’s most notorious teenaged killers have parole privileges extended

Derik Lord gets overnight privileges while Kelly Ellard’s are extended

A woman wears a face mask and shield to curb the spread of COVID-19 while walking in North Vancouver, B.C., on Wednesday, January 6, 2020. THE CANADIAN PRESS/Darryl Dyck
536 COVID cases, 7 deaths reported as B.C. find its first case of South African variant

Henry said 69,746 people have received their first dose of the COVID vaccine.

Anyone with information on any of these individuals is asked to call 1-800-222-TIPS (8477) or visit the website victoriacrimestoppers.ca for more information.
Greater Victoria Crime Stoppers wanted list for the week of Jan. 12

Greater Victoria Crime Stoppers is seeking the public’s help in locating the… Continue reading

50 km/hr speed limit sign.
POLL: What do you think the speed limit should be on residential streets without a centre line?

Traffic on side streets around Greater Victoria could soon be travelling at… Continue reading

Prime Minister Justin Trudeau listens to a question during a news conference outside Rideau cottage in Ottawa, Friday, January 8, 2021. THE CANADIAN PRESS/Adrian Wyld
Trudeau says Canada’s COVID vaccine plan on track despite Pfizer cutting back deliveries

Canadian officials says it will still likely receive four million doses by the end of March

Letisha Reimer died Nov. 1, 2016 after being stabbed at Abbotsford Senior Secondary.
No evidence that killer was in ‘psychotic state’ during Abbotsford school stabbing: Crown

Second day of closing arguments at ‘not criminally responsible’ hearing for Gabriel Klein

Jackie Hildering, whale researcher with the Marine Environment Research Society, and Nanaimo Area Land Trust will present the Return of Giants, a webinar about the humpback whales’ return from the brink of extinction and how boaters can help protect them. (Jackie Hildering/MERS photo taken under Marine Mammal License MML-42)
‘Return of the Giants:’ B.C. getting 2nd chance to coexist with humpback whales

‘Marine Detective’ partners with Nanaimo stewardship group on webinar

Seiners fill the waters between Comox and Nanoose Bay during roe herring fishery. file photo, Pacific Wild
Quota debate heats up on the eve of Vancouver Island herring fishery

Industry and conservationists weigh in how much catch should be allowed as DFO decision coming soon

Most Read