A Vancouver Island family is overwhelmed to find out the B.C. government will help pay for life-changing treatment for their daughter who's battling a rare and fatal disease.
Jori Fales and Trevor Pollock received the news Friday that the province will help their daughter, three-year-old Charleigh, was diagnosed with CLN2 Batten Disease.
CLN2 Batten Disease causes children to experience seizures, blindness, loss of motor function and dementia.
Charleigh has been in and out of the hospital since last October, when she began having seizures.
In May, she became the 13th child in Canada to be diagnosed with the rare disease. Of the few hundred documented cases worldwide, most children died from the disease between the ages of 8 and 12.
The only treatment for kids like Charleigh is a $750,000-per-year enzyme replacement therapy, Brineura, which was FDA approved just two years ago.
Although it is not a cure, the treatment is intended to slow the loss of ability to walk or crawl. The drug is new but shows promising results, and Jori says she's elated to learn they've secured funding to start the treatment.
"The last three weeks, we've been in utter shock of what's been going on," Fales tells CTV News. "Now we're feeling some glimmer of hope. Hopefully this therapy is going to really help her. It's a life boat."
The parents say Charleigh still has a long road ahead, which includes infusions and brain surgery.
"This is just the first step to a long journey ahead for our family and we appreciate all the continuous support from all our family and friends," dad Trevor says.
A GoFundMe page was set up to support the parents in covering the costs of travel, missed work days, visits to specialists and other medical expenses. It has already raised more than $73,000.
The information section describes the deterioration of Charleigh’s health through her parent’s eyes.
“Charleigh suffers countless, painful seizures a day,” it reads. “She is now being supplemented through a feeding tube. She is still walking and saying a few words but is declining quickly before our very eyes. Between the seizures, medications, and disease she is becoming a shell of the person she was a few short months ago. As a parent there is nothing more painful than watching your child suffer.”
The page has since gone viral, and the goal of $100,000 has almost been reached after just over two weeks.
For Charleigh’s parents, these donations mean less stress, and more time and energy to focus on getting their toddler the help she desperately needs.
The Issac Foundation's Project One Million was helping to advocate for Charleigh to get the funding for Brineura. Her parents were hoping to make history by bringing the treatment to B.C. for the first time.
