Baie-Sainte-Anne youth dies after long battle with rare genetic bone disorder
CBC
People in Baie-Sainte-Anne, N.B. are grieving the loss of a young man who was well-known for his positivity and determination while battling a rare genetic illness.
Morgan Doucet died Saturday from Morquio syndrome, a disorder that affected him since birth. He was 18.
Frank Doucet, Morgan's grandfather, said he was known to everyone in the community and touched people with his optimism. He would visit him everyday.
"He never complained. He was a little angel," he said in French.
Morgan Doucet faced challenges from Morquio syndrome throughout his life, undergoing several surgeries. The degenerative disorder affected his joints and bones, and he used a wheelchair to get around.
While there is no cure for the illness, several years ago,his family found a new drug they hoped could slow the progress. But the drug Vimizim costs $300,000 a year and Morgan was initially denied coverage by the province.
New Brunswickers heard about Morgan's story after his family pushed the government to reconsider. Eventually, in 2015, the province agreed to pay for it. But while the drug helped at times, Morgan experienced severe side effects and ultimately had to stop taking it.
His family said at the time it was worth the fight, because it might have opened the door for other children with similar conditions.
Frank Doucet said he always told his grandson he hoped to live to see him graduate high school, an accomplishment he achieved in June.
"It was unbelievable," he said.
Carmel Manuel, Morgan's great aunt, said it was a proud moment to see him on the stage.
"We had chills because we knew it was one of his dreams that he had just accomplished," she said in French.
Manuel said he was known by everyone in the small village of Baie-Sainte-Anne, and had an impact on many of his peers at the community school.
Morgan Doucet was also an advocate for other youth with disabilities. At 14 years old, he pushed for a new playground at École Régionale de Baie-Sainte-Anne to be accessible to kids with reduced mobility.