“Action Duchenne gave Dougie and our family the hope and support we needed at the most critical time.”
Dougie was diagnosed with Duchenne muscular dystropy in July 2020, when he was 6 years old. People living with Duchenne muscular dystrophy experience progressive muscle weakness and typically need to use a powered wheelchair from their early teens. The heart and breathing muscles are eventually affected and most will require a ventilator in their twenties. There is no cure.
On his diagnosis Dougie had wonderful care from medical professionals. With one consultant saying “His sheer determination and attitude will help him greatly.” It is not hard to see what a joyful and determined young man he is, and despite his physical challenges he is a great swimmer and cyclist. He plays the guitar and drums, taking weekly lessons. He’s also a great writer, illustrator and car fanatic.
As a family we experienced a lack of emotional support at what was a very dark time. It is every parents worst nightmare come true. We really couldn’t believe our beautiful boy had a condition that would foreshorten his life. I searched for support on the internet and I found Action Duchenne.
Action Duchenne provided a caring, supportive and positive extra pair of hands needed for us as we adapted to his diagnosis. As a family we were also able to access a counsellor, talk about treatments, care and research. Their support happened for us at a critical time, and without them I fear our lives would have become consumed by sadness and helplessness. Yet they made it very clear that a life with Duchenne can be amazing, and they could prove it by their active work in spreading awareness of all the things people living with Duchenne are doing…becoming teachers, getting degrees and fronting rock bands.
Action Duchenne is truly amazing charity and Duchenne familes like ours, and children like Dougie, really need them ~ Victoria, Dougie’s Mum
