World Duchenne Awareness Day
07th September 2021
World Duchenne Awareness Day
The date of 16 August 1998 is emblazoned on the heart of Healthcare Assistant Anne. It was the date Anne started working at Demelza Hospice in Sittingbourne and the year the hospice first opened its doors. And over the following 23 years, Anne has worked alongside many children and young adults with Duchenne Muscular Dystrophy, helping them manage the move into early adulthood.
Now in her early 60s, Anne is working part time, although up until December last year, she was full time. Anne says: “Early on in my career, I spent three days training at York University, learning as much as I could about Duchenne Muscular Dystrophy and over the years I have attended workshops and worked alongside parents to help their children transition out of children’s services into the wider world”.
Anne continues: “I love what I do, I mean what’s not to love about working at Demelza? Working with parents is so important as they learn so much from each other. One young man with Duchenne particularly stands out. He was so shy and self-conscious when I first met him but grew in confidence and when he came to Demelza for his last visit, had sorted out his life and was looking forward to the future”.
Another young man who Anne remembers working with at Demelza is Ravi Mehta, who is now working as Project Engagement & Support Coordinator for Action Duchenne – a charity supporting children and young adults with Duchenne and their families. Ravi is working on a peer-to-support project in conjunction with Demelza, aiming to develop a network of young adults (25 years and under) to maximise opportunities and maintain aspirations for the future as they transition into adulthood and beyond.
Anne says: I first started to work with Ravi when he was a young boy, a boy who persevered so hard to keep as mobile as possible. What I remember most, are the great times we had making memories, going to watch a movie and out for dinner, Ravi helping me with my mobile phone – all the things young people know about that us old ones don’t!
I have had an incredible journey working at Demelza and working with children and young adults with Duchenne. I have hopefully made a difference to these young people’s journeys - they have certainly enhanced my life.”
To find out more about the project Action Duchenne are working on with Demelza, and to take part in the survey that closes at the end of September, click the button below.