A Manitoban is losing his ability to move his muscles. A drug might prevent that, but the province won’t pay [Video]

The first thing Jeremy Bray does every morning is check whether he can still move his left thumb. 

He wakes up daily with the fear he may have lost the only way he has to operate his wheelchair, maintain a job and live independently.

Bray has spinal muscular atrophy, a rare degenerative disease that’s gradually robbed him of the ability to move his muscles.

At age 29, he can no longer move his face, arms, hands or legs. He’s down to the use of just one thumb, but time is running out before he loses that too.

“I can’t imagine that I have more than a few months to a year left like this,” he said, his soft voice trailing off.

Bray, who lives with his parents in the small southwestern Manitoba community of Rivers and works full-time as a data consultant, has noticed his thumb becoming weaker over time. …