VIDEO: Potential Life-Saving Drug Assisting Windsor Family

A Windsor family is celebrating.

Nicole and Eric Lamont are smiling from ear-to-ear after learning their two-year-old daughter Lilah will receive full coverage for a potentially life-saving but very expensive drug.

Lilah has a rare condition called spinal muscular atrophy and has been on a free trial for 'spinraza.'

The Pan-Canadian Pharmaceutical Alliance recently cut a deal with Biogen, the maker of the drug, which is covering the first nine doses. It would have cost the family $750,000.

Nicole Lamont tells CTV Windsor her daughter has made a lot of progress.

"She's getting much stronger," says Lamont.  "She had lost all her muscle movement to the point all she could do is wiggle her fingers now she's moving her legs and she's starting to hold her head up, she can throw toys, learning sign language."

Eric Lamont says the drug has made a difference.

"It was just a couple hours after her first injection of the drug, there was a little twitch in her leg and we called the nurse over and said hey look she just moved for the first time," says Lamont.  "The nurse said get out of here, it's been two hours, the doctor hasn't even thrown the drug out and you're already saying it worked.  She came in and saw the twitch and said oh well it's actually working, it's incredible."

Provincial drug plans will pay a lower price for the drug under the deal that was reached, however, only a narrow subset of patients with the most severe levels of SMA will be covered.