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.
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.
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.