A woman is trying to raise money to buy a cough-assist machine for her grandson after discovering that NHS Lothian will not provide a new one.
Maggie Shirkie (57), from Bonnyrigg, who works in the kitchen at the Dalkeith schools campus, hopes to raise the £3800 as soon as possible.
Her grandson Shaun Shirkie, who was 16 on Monday, suffers from Duchenne Muscular Dystrophy, a severe muscle weakness. The machine would improve the ability of the Saltersgate pupil to cough, reducing his chances of infection.
She said: “When I found out that he is not entitled to a machine because he lives in Lothian, but would have got it had he lived in Glasgow, I was fuming, it’s a total disgrace.
“He’s got Duchenne Muscular Dystrophy, they all get this machine and they need it.
“It stops his lungs from filling up, he can’t cough as such. A wee cold to us, is a big thing to him. When he tries to cough we are panicking.
“He has got one on loan from the Sick Kids but I think it was one of the first ones ever made, Shaun needs his own, up to date one, it would do so much more for him and make such a difference to his life.”
Maggie explained that her grandson has been in a wheelchair since he was seven years old and that his organs and muscles have gradually deteriorated as he has got older.
She added: “Now we have got to do everything for him, clean his teeth, wash him. He can’t even sit up unaided now.
“The only thing he has really got is that he can talk. He has got a great personality, he is a character.
“We just want to raise as much money as we can.”
Maggie will hold a jumble/ bake sale on May 6 at Cockpen Church Hall 10am-2pm, while staff at Shaun’s school are doing a sponsored walk for him. And, this Saturday family and friends will collect money at the Bonnyrigg Rose game, with Sean’s uncle Alec King a former player there.
Jacquie Campbell, of NHS Lothian, said: “We are committed to ensuring that patients with long-term conditions are given the support they need to keep them safe and comfortable, we give them equipment on a permanent loan basis. Medical advances often lead to improvements in equipment, so we regularly review what we have, and are currently reviewing our cough assist machines.”
To donate go to www.justgiving.com and search ‘margaret shirkie’.