MONTREAL – Simon Hogue, 15, is living with Duchenne Muscular Dystrophy, a rare disorder that results in muscular degeneration and premature death.
The teen recently took part in a clinical trial for the drug Drisapersen, which showed promising results and improvements for many patients – including Simon.
But the drug isn’t approved in Canada or the United States, so Simon, along with his mother Andrea Cleary spent the afternoon of Nov. 24, 2015 speaking before the U.S. Federal Drug Administration’s (FDA) advisory committee.
They are spearheading a campaign to get the lifesaving drug approved.
“He was constantly falling, his knees were bruised up, all bloody,” Andrea said, referring to Simon’s condition before the clinical trial.
“At one point, he had fallen and knocked his front teeth loose.”
On the drug, Simon was able to regain control of his movements and had more energy throughout the day.
“I felt very good,” Simon added.
“With the drug I fall less, and I haven’t fallen in two months.”
At the end of the trial, the patients were weaned off the drug, leading to the deterioration of Simon’s condition and the beginning of the family’s campaign to get the drug approved in Canada.
Simon and Andrea have joined an online petition, which can be accessed here.
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