A BOY with an incurable condition has delivered a touching handwritten appeal to Nicola Sturgeon to support funding for breakthrough treatment that will keep him walking.
Nine-year-old Michael Young, who lives with the life-limiting muscle-wasting condition, Duchenne muscular dystrophy travelled with his family from Falkirk to Holyrood, to deliver his letter in person to the First Minister.
Few sufferers live to see their 30th birthday and many need a wheelchair by the time they are eight years old.
But a breakthrough with a drug called Translarna has kept children walking longer and has reversed some of the effects of the condition.
It is given to boys aged five and older who can move around without much help.
Michael's letter asks for help to make sure the breakthrough treatment, reaches all boys in Scotland with his condition.
Muscular Dystrophy UK, which has supported Michael, say Translarna has been available in several other EU countries for more than a year, but families in Scotland and the rest of the UK are still enduring agonising waits for news on NHS funding.
The only exception occurred in October last year, when four-year-old Cormac Fegan (pictured above) from Longniddry became the first and only UK child to receive the drug through the NHS, following a successful Individual Funding Request to Lothian Health Board.
Michael said: “It was lovely to meet Nicola Sturgeon. She was really friendly and I hope she can help boys like me in Scotland.’’
Commenting on the day, Michelle, Michael’s mother, said: “It was a big day for Michael and our family to be in Scottish Parliament with the First Minister.
"We are so proud of Michael, who spoke brilliantly throughout the day. Living with Duchenne muscular dystrophy is a lot for a young boy to deal with. Michael knows that medication can keep him and other boys like him walking for longer, which is why today was so important.’’
Robert Meadowcroft, chief executive of Muscular Dystrophy UK, added: “We are delighted that Michael was able to deliver his amazing, heartfelt letter to Nicola Sturgeon in person, an opportunity that doesn’t come every day.
"The meeting means a great deal to the Youngs, and other families who live with Duchenne muscular dystrophy across Scotland.
"It is wonderful that the First Minister gave up her time in support of Michael, and we hope their meeting will lead to positive discussions with the Scottish Medicines Consortium about Translarna.
“While today’s meeting should be celebrated, it is appalling that families are having to battle to secure this licensed medication in the first place. We urge the Scottish Medicines Consortium to support Translarna, and give these children the chance of extra time on their feet.”
A spokesman for SMC said they are currently assessing the first submission for ataluren (Translarna) for its use in the NHS in Scotland, It will provide advice to boards in due course.
Michael’s letter said:
"Dear First Minister
My name is Michael Young (age 9) and I have Duchenne muscular dystrophy. I NEED your help.
I have medicine called Translarna. Some boys have the same problem as me but don’t get the medicine. We need (you and me) to help Duchenne boys, because it is not something that a lot of people know about and the boys need medicine.
If my medicine is stopped I will need a wheelchair.
Please can I meet with you so that you can help boys to keep walking and get Translarna. I can meet you anytime and anywhere.
From Michael Young
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