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Meeting a doctor with the expertise to diagnose her son’s condition after countless others had failed to see it was the catalyst which led Emma-Jayne Ashley to create a charity that is now making an impact around the world.
Her son Dregan, now 24, was born with a life-limited condition called Congenital Myotonic Dystrophy, but wasn’t diagnosed until he was 14. In the intervening decade Emma-Jayne has spearheaded awareness-raising, peer support, and facilitating research through the charity CureDM, which she operates with husband Pete from their home in Whitton, North Lincolnshire.
She has even launched an International Awareness Day, which now takes place every year on September 15th – Dregan’s birthday. “We’re in touch with people as far away as Japan who suffer with the condition, and we’re supporting a forthcoming international conference in The Netherlands.”
Coming soon are online courses in Makaton, a communication system to help hearing people with learning or communication difficulties – necessary because some sufferers, like Dregan, become non-verbal when they’re in pain, and can’t explain what’s wrong.
Her work is being supported by the Freemasons’ charity the MCF, which has donated £8,915 to the cause. The money will be used to fund family events which they’ve started to run each July. That’s when families can come together and benefit from peer support. “That’s so important,” says Emma-Jayne. “These events are like the condition; they’re life changing. People can see they’re not alone, and firm friendships are formed between people from all over the country.”
Last year the group went to the Lake District. “The results of that were better than we’d dared hope, and spurred us on,” she said. CureDM funds the weekend for whole families, so that non disease-affected siblings/caregivers can be included too.
“The results are wonderful. It’s good to see people happy and supported, and it’s exciting to read emails afterwards that tell us how life-changing they’ve been.” The next event will be on May 4th at The Deep in Hull, and the group will also go to Legoland. Through the charity she has brought together families who realise at last that they’re not alone.
Myotonic Dystrophy is a degenerative genetic disease, and therefore passed on from parent to child, getting worse with every generation – but since it’s so often misdiagnosed, it can exist in families for generations without appropriate medical management. “We’re changing that,” says Emma-Jayne. “We are providing people with the knowledge and confidence to talk to medical professionals, to raise the profile of the condition, and with our advice and assistance for things as diverse as care guidelines, breathing exercises that can keep people out of hospital, and even disability benefit or housing adaptions, we’re making a difference.
“Alongside caring for Dregan and having full-time jobs, the charity fills every waking moment, and we couldn’t do any of it without support from people like the Freemasons. We now have a team of six wonderful trustees around the UK and can fight the fight better together.”
About the condition
Congenital Myotonic Dystrophy causes weakness of the voluntary muscles, although the degree of weakness and the muscles most affected can vary greatly. As the disease progresses, the heart can develop an abnormal rhythm. More information: www.curedm.co.uk www.facebook.com/curedmcharity
