Over the past few weeks, we have been able to send 40 of our families a free copy of The Abilities in Me Duchenne muscular dystrophy book, thanks to the wonderful author Gemma Keir.
One family shared with us the impact the book has already had on them.
“We are all in love with the book, I shed a tear as I read as it is so simplistic yet so cleverly and accurately written and in such a fantastic way for small children to relate to their illness, it’s beautiful.
Digby is 6 and currently has no understanding or knowledge of DMD. He has been enrolled in the Baby Skip Etiplirsen trial at GOSH since his diagnosis at 2, having completed 4 years plus of weekly infusions, but as he was so young when everything around him that was being done to try and help him started, he has no idea it’s not the norm.
He currently just accepts things at face value, his silly legs, his little wheelchair etc etc . No questions ..yet! Digby also has Global Development Delay and so his learning, behaviour and development are more in love with a 3-4 year old which further explains his lack of asking questions…yet!
I can definitely see now that this book is going to be read time and time again to help him as his understanding and curiosity grow about how he feels grows and when his questions begin to be asked. We believe it will be a great way to explain it in a way his brain can compute.
One of his siblings, his big sister Matisse sat and had the first read through of the book with him, a special moment for us, as Matisse is a Manifesting Carrier of DMD. She therefore understands so much more about how he feels, the pain he can experience and the fears he will encounter in the future.
Thank you again, to you and the team there and to the very brilliant and talented authoress Gemma. We are very grateful.”
We are now able to offer these books to more families. There will be no charge for the book, only for postage.
Springing into action
