Pontypool Civic Centre will be lit red today (7 September) alongside other public buildings in Wales to mark World Duchenne Awareness Day.
Its estimated 2,500 children have Duchenne Muscular Dystrophy (DMD) in the UK, which mainly affects boys and causes progressive muscle weakness.
Over the past few years, Newport East Member of Senedd John Griffiths has been campaigning to improve the lives of people living with the condition, like Elliot Vers.
Six-year-old Elliot from Newport was diagnosed with DMD several years ago.
John said: “The condition came to my attention when I met one of my younger constituents, Elliot, and his mum Lucy. He is the sweetest person imaginable, but it was heartbreaking to hear his mum tell his story.
“At present, there are no clinical research trials and specialist care in Wales for children with Duchenne, so Lucy and my office have been working closely to change this – and we are hopeful! By working with Health and Care Research Wales, Duchenne UK, Welsh health boards and other organisations, we know change is coming.”
Duchenne Muscular Dystrophy is one of the most severe forms of inherited muscular dystrophies.
Elliot is doing well and was looking forward to returning to school this week.
To find out more about Duchenne Muscular Dystrophy and help spread the word, visit the Duchenne UK website.