When McNeil found out his grandson had been diagnosed with SMA, he couldn't stop crying. Now, he and his family have turned terror into courage, playing critical roles in research and raising awareness — via healthing_ca healthnews SpinalMuscularAtrophy
, a patient-oriented clinical trial initiative supported by the federal Canadian Institutes of Health Research. Oskoui adds there is a spectrum for SMA where some develop symptoms in the first few months of life and others develop it in childhood or even as teenagers.
“[Malik’s family] was courageous during a time where we didn’t know if these drugs worked, if they were safe,” says Oskoui. People who show the first signs of muscle weakness after 18 months old tend to have a milder form of SMA. Often, they can walk independently, but will lose that ability as the disease progresses. A positive message comes in a recentthat found that long-term treatment with nusinersen improved patients’ walking distance.
“He can sit for long periods of time now and he can go from sitting to lying down by himself. He can participate in transferring to his wheelchair,” Claudia says, adding that he’s also performed on stage with his peers and likes the challenge of escape room experiences.
Canada Latest News, Canada Headlines
Similar News:You can also read news stories similar to this one that we have collected from other news sources.
A grandfather embarks on 'emotional,' cross-Canada journey to raise awareness for spinal muscular atrophyWhen McNeil found out his grandson had been diagnosed with SMA, he couldn't stop crying. Now, he and his family have turned terror into courage, playing critical roles in research and raising awareness — via healthing_ca healthnews SpinalMuscularAtrophy
Read more »
Eliminated Medicine Hat siblings talk about what viewers didn't see on Amazing Race CanadaShayla Oulette Stonechild and Joel Oulette\u0027s main motivation for joining Amazing Race Canada was to be an example for Indigenous youth
Read more »
City clarifies Service Line Warranties of Canada partnershipIn reaction to homeowners receiving letters from Service Line Warranties of Canada, the City of Greater Sudbury has clarified the nature of their partnership with the company
Read more »
City clarifies Service Line Warranties of Canada partnershipIn reaction to homeowners receiving letters from Service Line Warranties of Canada, the City of Greater Sudbury has clarified the nature of their partnership with the company
Read more »
Eliminated Medicine Hat siblings talk about what viewers didn't see on Amazing Race CanadaShayla Oulette Stonechild and Joel Oulette\u0027s main motivation for joining Amazing Race Canada was to be an example for Indigenous youth
Read more »