2023-08-29 23:30:00
After turning the page on what was arguably the most difficult ordeal of their lives, the parents of little Nathan Ouellet, saved from a rare genetic disease in 2020, decided to give back to the community.
The CHU de Québec Foundation announced on Tuesday the receipt of a major donation of $350,000 from parents, Marc-André Ouellet and Geneviève Caron, of Chicoutimi.
The money will buy two devices to help detect spinal muscular atrophy in newborns, a serious and rare neuromuscular disease that could have killed their own son.
“It is essential to treat children early, hence the need to screen from the first days of life,” explains Marc-André Ouellet in a press release.
Photo archives QMI Agency, Roger Gagnon
The worst news
The sum comes from the pot of $ 915,000 which had been gathered in disaster in the summer of 2020 with a crowdfunding campaign.
The couple had just learned that Nathan, who was not yet a year old, had this condition which causes a gradual and irreversible loss of the cells controlling the muscles.
But the only drug that could help him, Zolgensma, cost $2.8 million and was not covered by public insurance at the time.
The story had a happy and unexpected ending in November 2020. Little Nathan received a free dose of the drug as part of a global lottery organized by the manufacturer, allowing him to make remarkable progress.
After offering a refund to donors who wanted it, the two parents decided to reinvest the campaign money in this cause as well as for Nathan’s medical needs.
They have since campaigned for the disease to be detected as early as possible to offer the best chances and the best quality of life to the next children who will be affected.
“We have decided to donate the donations received. After various discussions […] Among other things, we have chosen to support the Fondation du CHU de Québec,” says Mr. Ouellet.
A difference
According to the President of the Foundation, Marie-Claude Paré, there is no doubt that their donation will help “make a difference for many children in Quebec”.
The devices in question, of the qPCR type (which stands for polymerase chain reaction), can identify the main mutation in the gene responsible for the disease. They are intended for the Saint-François d’Assise Hospital, in Quebec.
“Babies at high risk of spinal muscular atrophy can be taken care of quickly, which greatly improves the effectiveness of the treatment,” underlines Dr. Yves Giguère, head of the department of laboratory medicine at the CHU de Québec-Université Laval.
In Quebec, spinal muscular atrophy affects between seven and eight newborns per year. It affects the ability to crawl, walk, move the head, and possibly swallow and breathe.
Zolgensma has now been reimbursed by the state since 2021. The Minister of Health, Christian Dubé, announced the following year that screening for the disease would be offered to all newborns.
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