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*Digital download*
It is important for children and young people living with Duchenne muscular dystrophy to have the right support at school, but sometimes it’s hard for parents and teachers to know where to begin.
Before my son was diagnosed with Duchenne Muscular Dystrophy and ASD/ADHD back in 2021, I was just a Mum to two healthy children. Life was simple, trauma free and I’d experienced little discrimination. How life has changed since diagnosis, and the amount of tears I have cried out of frustration, trauma and loss due to the lack of understanding I have received at times.
How we wish as ‘children of extra need parents’ that we didn’t have to do so many extra things just to make sure our children are healthy and supported. People say every parent is busy – and that’s very true. But I have been just one of those ‘every parents’ – and life was much much easier for myself and my family when my husband and I were classed as one.
When you are a parent of a child with a life limiting illness like Duchenne you are having to battle and fight for your child and your family to access the same things as everyone else. Sadly this paints a bleak picture on what life will be like for our child as an adult. A non stop ‘fight’.
Our Support Team here at Action Duchenne have daily contact with parents and carers struggling with the above. We have created this information and support pack for schools with pupils living with Duchenne, to help provide a good understanding of what pupils with this complex condition, and their families, need. ~ Victoria, Duchenne Parent
