![]() ![]() “And they have to adapt their homes to these growing children. There’s not as many nurses working in homes or there’s not as much support in CLSCs. ![]() “Within the past couple of years, we’ve seen a lot of resources diminish. There is a lack of financial support for families with disabled children and not enough resources in the community, Allard said. They help families navigate the health and social services landscape, which is broken into many different departments and aid organizations. Her team in the complex care unit of the Montreal Children’s Hospital follows patients who are medically fragile and who have medical technology at home. Nadine Allard says she sees families like Liam Défossés’s struggle every day, and is discouraged when she hears all the things they need to fight for. Yan Défossés, 10-year-old son Liam, wife Emmanuelle and 13-year-old son Malou on a nature walk. ![]() The prognosis is indeterminate.”Ĭure SMA raises awareness and funds and offers various forms of support for families living with spinal muscular atrophy. The SMA community has helped raise $60 million over 15 years to feed the research pipeline, Défossés said. “We keep faith, but every time he has a virus it could be the last time. With more research, they can help Liam build more muscle and be more autonomous. We keep hope that there will be more innovations. “Not a week goes by without hearing about a friend who gains their wings to go to heaven. “As parents we know we are always in conflict,” Défossés said. This advertisement has not loaded yet, but your article continues below. Manage Print Subscription / Tax Receipt. ![]()
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