Louisa has worked tirelessly to raise awareness and money for the treatment of Muscular Dystrophy since her son was diagnosed with the illness has been nominated for a Pride of Bucks award.
Louisa Hill of Chalfont St Peter has been put forward for the award by her mother Christine Young in recognition of the work that she has done. To date, she has run four marathons, completed the London to Brighton walking challenge, and every day for the past five years has organised a charity golf day, raising several thousand pounds.
April 2015
Louisa and Gary, have spoken of their fears that a drug called Translarna will be rejected by NICE.
NICE will meet to review whether the drug should be funded on the NHS, and the Hills will hear before Christmas of NICE’s decision if the drug will be made available for Archie and 50 other boys like him.
The drug has been made available in countries including Germany, France, Spain and Italy, but families across the UK have faced waits for news on funding.
The Government allows some medicines to be fast tracked. This includes rapid assessment and early access to Translarna before it is officially licenced along with no cost to the NHS the drug firms are willing to pay for the opportunity to try on people.
March 2014
"The family of a 10-year-old boy with a life-limiting condition have told ITV News they are "devastated" after the health watchdog refused to grant access to a breakthrough drug to NHS patients in England.
Schoolboy Archie Hill was three when he was diagnosed with Duchenne Muscular Dystrophy - a muscle-weakening condition that has an average life expectancy of 27, and could see him needing a wheelchair in just a few years."
"A wish came true for a nine-year-old who has muscular dystrophy and wrote to David Cameron in a bid to meet him and ask for his help. The Prime Minister surprised Archie Hill of Gerrards Cross and his family outside 10 Downing Street as they handed in a 22,785 signature petition calling on the NHS to end delays to a breakthrough treatment, Translarna."
"A nine-year-old Arsenal superfan was stunned to find a fan of his own waiting for him when he returned home from school - his footballing hero, Jack Wilshere.
Archie Hill, who suffers from Duchenne muscular dystrophy, impressed the England midfielder after he appealed to Prime Minister David Cameron for help with his condition."
The medicines regulator NICE has recommended that Translarna (also known as ataluren) be used to help children who will receive the most benefit. The drug has the potential to delay the loss of the ability to walk in children with the muscle-wasting disease. Families and charities say they are delighted by the decision.
This means that it can only be used to treat a small group of certain children - those with Duchenne caused by a particular mutation who are aged five years and over and who are still able to walk.
