A special charity ball held in Blackpool this year proved so successful, there are already plans for a second one.
And mum Emma-Jayne Ashley hopes a current story-line in ITV soap Coronation Street will boost her fundraising efforts even more.
Her second fundraising ball will take place at the Hilton Hotel, on July 8, 2017. It will raise money for a cause which couldn’t be closer to her heart.
The Congenital Myotonic Dystrophy Fight Fund was set up last year by Emma-Jayne, with three other UK families and is supported by Muscular Dystrophy UK. It has already raised £30,000 – ring-fenced for research.
Emma-Jayne’s son Dregan Turner, 17, was born at Blackpool Victoria Hospital and has a rare form of muscular dystrophy, congenital myotonic dystrophy – a severe life-threatening, neuromuscular condition which affects every organ. He had medical problems since birth, but it wasn’t until he was nearly 15 doctors made the diagnosis.
Emma-Jayne, who grew up in Blackpool but now lives in North Lincolnshire, has made it her mission to raise awareness of the condition and says she is delighted it is being covered on Coronation Street.
Viewers have recently seen landlord Steve McDonald being given the news he could have myotonic dystrophy, and worrying over the health of his unborn children, who could inherit it too.
Emma-Jayne said: “It’s a devastating diagnosis. There’s no cure, it’s progressive. It causes significant reduction in life expectancy in children.
“Dragen has a more severe version. Over the years, we were told all sorts – autism, dyspraxia, even laziness. He has profound learning difficulties, he recently had a feeding tube fitted as the muscles in his throat have deteriorated.
“For me, the Coronation Street storyline has been really true to life.
“We’re really pleased with the fundraising. My husband Pete ran the London Marathon, Dragen’s younger brother Xander has raised money, and we are Roll Royce’s chosen charity.
“We’re raising money for research and hope to raise awareness.
“We want other families to get an earlier diagnosis and not have to wait 15 years.
“Dragen is one of the oldest children with the condition, so we make the most of everything, we’re all about having good experiences and making memories.”
Finding there was little support, Emma-Jayne managed to find other families affected by the condition through the internet, including one in Fleetwood.
After talking about what they felt was missing and their hopes for the future, they set up the charity.
A Christmas fair in aid of the cause will take place on December 4, at the Ashley Club, Thornton, 10am-4pm – including Santa and entertainment from Blackpool Operatic Players, Anchorsholme Academy Choir, and Thornton Cleveleys Brass Band.
Visit www.cmmd.uk or facebook.com/FightFund