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Vancouver Island parents desperate to get help for daughter with rare disease

Last Updated Jun 12, 2019 at 10:54 pm PDT

Three-year-old Charleigh has been diagnosed with CLN2 or Batten disease. (Source: GoFundMe)

Parents of a three year-old girl are desperate to get treatment for their daughter with CLN2 or Batten disease

Children with the disease typically only live between six and 12 years

A GoFundMe for the child has raised more than $66,000 of the $100,000 target

VICTORIA (NEWS 1130) — A Victoria-area couple is living most parents’ worst nightmare, as their three-year-old daughter Charleigh has been diagnosed with a devastating, debilitating and deadly disease: CLN2, also called Batten disease.

It’s an extremely rare disease — only 13 children in Canada have it — and the drug that can slow, or maybe even halt the progression of the disease is just out of reach. The longer she waits to get it, the worse she her condition will get.

"Knowing there are other families across Canada that are going through this and are receiving this life-saving treatment – it makes me happy for them, but it makes me very sad for us. We want the same opportunity for our child to grow, and play, and laugh. And live."Meet Charleigh, who was recently diagnosed with CLN2 in BC. She's one of only 13 patients in Canada. Other children across the country have started receiving access to a life-saving treatment, but time is rapidly running out for Charleigh to be approved for the same treatment.Please watch and share. This story is too heartbreaking to scroll past, and watching, sharing, and commenting will help save this little girl's life. We will be working hard to help this beautiful little girl and her family before time runs out, and will update you as things progress. In the meantime, for more information about CLN2, please visit www.theisaacfoundation.com/batten.#Hope

Posted by The Isaac Foundation's Project One Million on Wednesday, June 12, 2019

The drug Brineura has passed two levels of federal approval, but hasn’t been approved for coverage in B.C.

Jori Fales says the disease is like Alzheimers, Parkinsons and Multiple sclerosis in one. She suffers countless, painful seizures every day and uses a feeding tube.

Just weeks ago she learned the disease is taking away Charleigh’s ability to everything, and when she turns four in a few weeks, it will just get worse.

“As the disease progresses the child will get dementia and lose all cognitive abilities and they won’t even know who anyone is anymore,” she says. “So even by age six she would be completely dependent and will have lost her vision by then, and the deterioration just keeps going.”

Most children with the disease will only live to between six and 12 years.

The drug Charleigh needs passed federal tests just days after she was diagnosed, and B.C.’s drug council approval team is set to meet on it in July.

The ministry says they are aware of this case and the urgency and are treating it as such.

Now the family is raising money for her treatment — it will cost $750,000 USD a year. A GoFundMe has so far raised over $66,000 of the $100,000 goal.