A SIX-year-old Pontypool boy presented a petition to Downing Street yesterday to fight for better standards of care for Duchenne patients.

Ethan Kinge, of Griffthstown, was diagnosed with the muscular wasting disease when he was two-and-a-half. He was joined by parents John and Becky Kinge, four-year-old brother Joshua, and hundreds of others in meeting MPs as part of a campaign led by charity Action Duchenne.

Duchenne Muscular Dystrophy affects one in 3,500 male births in the UK, and Mr and Mrs Kinge said they would like a centre of excellence for the condition created in Wales. The Kemys Fawr Infant School pupil has checkups at London’s Great Ormond Street Hospital as well as physiotherapy at home every day, including wearing splints at night.

Mr Kinge, 34, said the condition did not show up on a newborn screening test and was diagnosed after they noticed problems with his walking.

Ethan is unable to run, hop, jump, ride a normal bike or walk long distances.

Mr Kinge added: “He’ll do as much as he can, he knows his limitations.

But it’s hard when he sees his little brother running around.” Those with Duchenne have a life expectancy into their late teens or early twenties and Mr and Mrs Kinge were told Ethan could be in a wheelchair by the time he is 13.

For more information, see their website via the link below.