Family of Lake Cowichan’s Charleigh Fales, who has a rare and fatal disease, wants to thank the community for all their support over the past year as the youngster turns five-years-old. (Submitted photo)

Family of Lake Cowichan’s Charleigh Fales, who has a rare and fatal disease, wants to thank the community for all their support over the past year as the youngster turns five-years-old. (Submitted photo)

Lake Cowichan family of child with fatal illness thanks community as Charleigh turns 5

Charleigh Fales turned five on July 2

Lake Cowichan’s Charleigh Fales turned five years old on July 2, and the family wants to thank the community for all their support over the past year.

In 2019, Charleigh was diagnosed as just one of 11 in Canada, and only about 500 worldwide, with CLN2 Batten disease, an extremely rare fatal genetic disorder.

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

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

The province agreed to pay for an expensive treatment, a new enzyme replacement gene therapy called Brineura which costs up to $750,000 per year, that was considered critical to help slow down Charleigh’s rapid deterioration, and the family has recently been informed that the provincial government will pay to extend the treatment for another year.

The hope is that the treatment will keep Charleigh alive long enough for a cure to be found for CLN2 Batten disease.

Charleigh and her parents had to regularly attend the B.C. Children’s Hospital in Vancouver, where the treatment was being administered, and family, friends and the community stepped up to help the Fales family financially, emotionally and physically through the crisis.

Almost $100,000 was raised by the community through a GoFundMe page to help the family pay for the trips every two weeks to B.C Children’s Hospital from the Cowichan Valley for her treatments, other medical bills, loss of wages and other expenses.

People even began bringing food and meals to the Fales’s home to assist.

RELATED STORY: PROVINCE TO PAY FOR LAKE COWICHAN YOUNGSTER’S MEDICAL TREATMENT

As Charleigh turns five, her mother Jori said she is doing fairly well, but her condition continues to decline since her diagnosis, and there is still no cure in sight.

“But she’s a happy little girl,” Jori said.

“After a year of travelling back and forth between here and Vancouver, her treatments have now switched to Victoria, which has turned a two-day situation into eight hours. Charleigh is meeting the doctors’ expectations, but her condition is still considered fatal, and we just don’t know how much time she has left.”

Jori said she expects Charleigh’s sixth birthday next year will be bittersweet as she starts the time frame of between six and 12 years old when most with the disease die.

“We just want to thank everyone for all they’ve done for us over the past year,” she said.

“We really appreciate all the support we received and it really helped us get through a very difficult time.”

Jori said anyone who wants to follow Charleigh’s progress can check out the Facebook page Charleigh’s Journey.

Health

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

Just Posted

Chris Wilkinson
Chris Wilkinson column: Time to slow down to speed up

In a society where we learn (are forced?) to multitask like crazy

A COVID-19 exposure has been reported at Shawnigan Lake School. (Citizen file photo)
Island Health reports COVID-19 exposure at Shawnigan Lake School

Shawnigan Lake School has been added to the list of schools in… Continue reading

Peas are great to grow in the garden, but a trellis for them in an A frame shape will offer more portability and wind resistance. (Citizen file)
Mary Lowther column: Making a foldable pea trellis on winter agenda

My previous methods required starting anew every spring

Sarah Simpson
Sarah Simpson Column: Books open up a world of discovery

We try to eat dinner as a family every night. It happens… Continue reading

The Cowichan Tribes’ gymnasium at 5574 River Road is now operating as an extreme weather shelter. (Submitted photo)
New extreme weather shelter opens on River Road in Duncan

New facility should relieve some pressure on Warmland House

U.S. Senator Bernie Sanders sits in on a COVID-19 briefing with Dr. Bonnie Henry, provincial health officer, and Adrian Dix, B.C. minister of health. (Birinder Narang/Twitter)
PHOTOS: Bernie Sanders visits B.C. landmarks through the magic of photo editing

Residents jump on viral trend of photoshopping U.S. senator into images

Nanaimo Regional General Hospital. (News Bulletin file photo)
COVID-19 outbreak declared at Nanaimo hospital

Two staff members and one patient have tested positive, all on the same floor

A long-term care worker receives the Pfizer vaccine at a clinic in Nanaimo earlier this month. (Island Health photo)
All Island seniors in long-term care will be vaccinated by the end of this weekend

Immunization of high-risk population will continue over the next two months

A 75-year-old aircraft has been languishing in a parking lot on the campus of the University of the Fraser Valley, but will soon be moved to the B.C. Aviation Museum. (Paul Henderson/ Chilliwack Progress)
Vintage military aircraft moving from Chilliwack to new home at B.C. Aviation Museum

The challenging move to Vancouver Island will be documented by Discovery Channel film crews

A video posted to social media by Chilliwack resident Rob Iezzi shows a teenager getting kicked in the face after being approached by three suspects on Friday, Jan. 22, 2021. (YouTube/Rob i)
VIDEO: Security cameras capture ‘just one more assault’ near B.C. high school

Third high-school related assault captured by Chilliwack resident’s cameras since beginning of 2021

FILE - In this Feb. 14, 2017, file photo, Oklahoma State Rep. Justin Humphrey prepares to speak at the State Capitol in Oklahoma City. A mythical, ape-like creature that has captured the imagination of adventurers for decades has now become the target of Rep. Justin Humphrey. Humphrey, a Republican House member has introduced a bill that would create a Bigfoot hunting season, He says issuing a state hunting license and tag could help boost tourism. (Steve Gooch/The Oklahoman via AP, File)
Oklahoma lawmaker proposes ‘Bigfoot’ hunting season

A Republican House member has introduced a bill that would create a Bigfoot hunting season

Economic Development and Official Languages Minister Melanie Joly responds to a question in the House of Commons Monday November 23, 2020 in Ottawa. THE CANADIAN PRESS/Adrian Wyld
Federal minister touts need for new B.C. economic development agency

Last December’s federal economic update promised a stimulus package of about $100 billion this year

FILE - In this Nov. 20, 2017, file photo, Larry King attends the 45th International Emmy Awards at the New York Hilton, in New York. Former CNN talk show host King has been hospitalized with COVID-19 for more than a week, the news channel reported Saturday, Jan. 2, 2021. CNN reported the 87-year-old King contracted the coronavirus and was undergoing treatment at Cedars-Sinai Medical Center in Los Angeles. (Photo by Andy Kropa/Invision/AP, File)
Larry King, broadcasting giant for half-century, dies at 87

King conducted an estimated 50,000 on-air interviews

Comox Valley RCMP are looking for witnesses after the theft of a generator worth thousands of dollars. Photo supplied
RCMP asking Vancouver Island residents to watch for stolen generator

Vehicle may have been travelling on Highway 19

Most Read