A mother whose son has a rare muscle-wasting condition has praised a soap opera for raising awareness of the disease.
In a recent episode of Coronation Street, the character Steve McDonald – played by Simon Gregson – found out that both he and his unborn children may be at risk of inheriting Congenital Myotonic Dystrophy (CMD).
After the programme had aired, Emma-Jayne Ashley, whose son Dregan was diagnosed with the neuromuscular condition a couple of years ago, welcomed the storyline.
Dregan, now 17, had experienced medical problems since birth, but was well into his teens before doctors confirmed he had CMD.
Mrs Ashley, who lives in Whitton, Lincolnshire, said: “We always knew there was something but always got fobbed off with ‘it’s autism’ or ‘he’s lazy’ – which was difficult to hear when you know that’s not true – and then to be told your son could have a significantly reduced life expectancy…it was really difficult.
“When he was diagnosed we didn’t know anything about it or anybody with it, then we found some families on Facebook and started our charity. We started a year ago and since then we have met a small group of families in the UK affected by it and we have raised around £30,000.”
Simon Gregson, who has been a member of Coronation Street’s cast for over 25 years, said: “I’m proud to be part of a storyline that will highlight little-known genetic conditions like Myotonic Dystrophy and bring them to national attention.
“As a dad to three boys, it’s reassuring to know there are charities like Muscular Dystrophy UK out there who can explain genetic testing and help families through the process.”
At EnViva Paediatric Care, our experienced staff can provide complex nurse-managed homecare for babies, children and young people with a range of disabling conditions including muscular dystrophy. For more information about the services we provide, please contact us today.