Kitchener-Conestoga Tory MPP Michael Harris visits Durham to talk rare diseases

February 2, 2016

Sufferers recount frustration of dealing with system

By Keith Gilligan

DURHAM — Nico Frappier looks like your average two year old.

Only, he isn’t. He is one of only six Canadians with a rare disease — a mutation of the SCN8A gene that causes epilepsy.

Given the rarity of the disease makes it extremely difficult to treat it, his mother Shelley said.

“The biggest challenge is finding a neurologist to lead the treatment,” Ms. Frappier said, adding it’s “scary” that she and her husband often lead the treatment.

She made the comments during a roundtable discussion hosted by Michael Harris, the Progressive Conservative MPP for Kitchener-Conestoga. Read More