Good news for Windsor girl with spinal muscular atrophy

CTV Windsor: Fighting for Lilah Parents of a child with spinal muscular atrophy are worried they no longer qualify for treatment. Rich Garton reports.

Some good news for a Windsor family worried about what could happen to her daughter if she loses access to a medication that is one of the most expensive in the world.

Lilah Lamont has an incurable condition called spinal muscular atrophy.

It's a genetic disease that damages the child's ability to move, leading to paralysis and often death.

Lilah has been taking a drug called Spinraza and her mother says it's been working.

As CTV Windsor told you last week, an expert panel is recommending only certain patients with SMA receive coverage for the drug, Lilah doesn't qualify because she uses a ventilator to breathe.

After the CTV story aired last week, the drug's producer Biogen said until a funding decision is made by the province, it will continue to pay for Lilah's doses through its early access program.