Dozens of boys from our region who have a muscle-wasting medical condition called Duchenne Muscular Dystrophy are continuing to campaign for access to a drug which could help to keep them out of a wheelchair.
NICE, the national body which chooses what medication will be available on the NHS, made an agreement to fund the drug Translarna on the NHS back in April, following 18 months of campaigning by boys with Duchenne Muscular Dystrophy and their families. However the drug is not yet available.
One Hampshire father, James Curtis - whose 8-year-old son Jagger has Duchenne Muscular Dystrophy, is cycling to Paris this week to raise money for an electric wheelchair to make his son's life easier. Kerry Swain has our report.
To find out more about the Peckham to Paris fundraising bike challenge click here.
Muscular Dystrophy UK has said that research into the condition has reached a critical stage. By 2018 the charity Duchenne Research Breakthrough Fund says it will have invested more than £4 million into studying the condition thanks to individual donations, family fundraising activities, trusts and corporate support.
Children will be able to access a drug tackling an underlying cause of life-limiting, Duchenne muscular dystrophy through NHS England.Read the full story ›
The family of 8-year-old Jagger Curtis have been waiting months for the wheelchair they have been promised to give their son a better quality of life.
As Meridian have discovered, they are not the only ones, many families are facing long delays in getting the specialist NHS wheelchairs that they have been allocated.
Health managers admit they're disappointed that the service isn't working the way it should.
Jagger has the muscle wasting disease Duchenne Muscular Dystrophy, and earlier this week we told you the story of how he has been waiting for his chair since May. He was told it might not arrive until after Christmas - but that was before our viewers stepped in to help. Sam Holder explains.
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.
Boys with the life-limiting illness Duchenne Muscular Dystrophy have lobbied the Prime Minister for more research into their condition.Read the full story ›