Michael tells doctorswhy Duchenne kidsneed effective help

Together with mum and dad Michelle and Justin he and other parents attended what’s reckoned to be a crunch meeting of the Scottish Medicines Consortium.

There the severe impact Duchenne has on those affected – and their family and friends – was spelled out.

Michael (9) captured headlines across the country last month when he appealed directly to First Minister Nicola Sturgeon to ask her help in the bid to get sufferers access to the drug Translarna.

He took a heartfelt plea, carefully penned in neat handwriting, direct to the Scottish Parliament.

Yesterday (Wednesday) his mum was among those trying to convince the SMC at a public and clinician engagement meeting - and it’s thought likely a decision will be made in early April.

It’s understood local NHS Trusts will still deal with individual funding requests for the drug – as with a young East Lothian boy who has received funding for six months.

Campaign group Muscular Dystrophy UK has asked local people to back Michael’s campaign any way they can.