Give kids with DMD chance of a longer life

THE pain of watching a child slowly lose their mobility to Duchenne muscular dystrophy (DMD) is a horror that nobody would wish on any parent.

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The disease causes progressive muscle weakness, leading to the gradual loss of function, heart and lung complications, and early death.

While incurable, the condition can be treated with Givinostat, which slows progression and can give patients precious extra years of life out of a wheelchair.

There are likely fewer than 30 boys in Scotland with DMD who are suitable for the new drug.

For their families, the fight to get access is a heartbreaking race against time because the sooner treatment begins, the more muscle wastage can be avoided.