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.
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.”
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.