Buckinghamshire Tory MP Cheryl Gillan asked the Leader of the House Chris Grayling for the latest on the campaign to help boys with Duchenne Muscular Dystrophy.
Six young boys with the muscle wasting condition Duchenne Muscular Dystrophy went to Downing street today to deliver letters to David Cameron.
They are pleading with the Prime Minister to speed up access to a drug that may help them walk for longer.
Full report on our website later.
Six boys who have a life limiting muscle wasting condition are to head to Downing Street later to appeal to the Prime Minister for help.
Among them is seven year old Jagger Curtis from Hampshire who has Duchenne Muscular Dystrophy. The boys and their families are campaigning for a specific drug to be made available on the NHS.
It's hailed as a breakthrough drug that can slow down the affects of a severe and progressive muscle wasting disease.
But the families of boys who suffer from Duchenne Muscular Dystrophy say it's taking too long for funding to be made available on the NHS.
The drug, Translarna, is already available for sufferers in Europe. The Government today said a decision of funding could be made by the end of this month.
But the family of Jagger Curtis from Romsey fear time is running out to improve the quality of his life.
MP for Romsey and Southampton North, Caroline Nokes raised a question in the House of Commons.
Two best friends from Cobham in Surrey are taking part in a 33km walk on the Isle of Wight to raise money for a friend and old classmate who has Duchenne Muscular Dystrophy.
Cobham Free School pupils India Brodie and Lily Kirkland, both aged 12, are hoping to raise £1,000 for charity Harrison’s Fund, by taking part in the Isle of Wight Challenge on Saturday 2 May. The event is 106km of coastal paths, ups and downs, around the Isle, where participants can walk, run or jog. The girls are walking a quarter of it.
The charity is named after the eight year old from Surrey who was diagnosed with Duchenne Muscular Dystrophy, a fatal genetic condition that affects the muscles, causing muscle weakness. The charity’s goal is to get as much money as possible into the hands of the world’s best researchers, who are working to find a cure for Duchenne.
To support Lily and India please visit https://www.justgiving.com/lilyandindia
Two lifelong friends who became fathers at the same time have joined forces to try to help save the life of one of their children.
Stuart Littler's son has been diagnosed with a devastating illness and now he and his friend are raising money for research into a cure.
Parents and sufferers of the condition Duchenne Muscular Dystrophy will take part in their annual march on Parliament today. The boys claim there is a postcode lottery of health provision for the condition which has an average life expectancy of 25.