Lytham Windmill and Blackpool Tower light up in support of mum's mission to raise awareness of rare, genetic disease Myotonic Dystrophy
A mum from the Fylde coast is raising awareness of a rare, genetic, neuromuscular disease after her son was diagnosed with the condition.
Emma-Jayne Ashley’s son Dregan has Congenital Myotonic Dystrophy – a life-limiting genetic disease that sadly claimed the life of his father Dominic Turner three years ago, when he was just 39.
Dregan was diagnosed with the disease, which affects the body’s muscles and organs, when he was 15 after years of tests – prompting his mum to co-found the Cure Myotonic Dystrophy UK Charity to support other families in a similar situation.
Emma-Jayne, who lived in St Annes before moving to North Lincolnshire, said: “It is a cause very close to my heart as my 22-year-old son was diagnosed with the most severe form of the disease.
“We set up the Cure Myotonic Dystrophy UK Charity to raise awareness, support families and facilitate research into this devastating disease.”
Lytham Windmill and Blackpool Tower were among 40 monuments across the country to light up in green in support of Myotonic Dystrophy Awareness Day on September 15 – which coincides with Dregan’s birthday.
Emma-Jayne added: “We are delighted that the awareness day is on Dregan’s birthday and are proud that this will forever be his legacy.
“It is really heart-warming to see that so many landmarks across the country joined with us to raise awareness of Myotonic Dystrophy.
“It gives hope to so many families across the UK, and the world, who are affected to see that they lit up to show solidarity.”
For more information about the Cure DM UK Charity visit www.curedm.co.uk