An inspirational Chalfont St Peter schoolboy who together with his family successfully campaigned to make a pioneering drug to tackle a muscle wasting condition available on the NHS are continuing their fight against the disease.
Archie Hill, 12, who goes to Chalfont Community College, was diagnosed with Duchenne Muscular Dystrophy in 2008 at just three-years-old.
Since then the courageous boy has continued his battle with Duchenne, a severe degenerative muscle wasting disease, which will lead to paralysis and will significantly shorten Archie’s life.
Children with the progressive disease typically become dependent on a wheelchair by the age of 12. It’s a progressive disease linked to the X-chromosome, affecting mostly boys.
There are 60 to 70 children born with the disease in England each year.
Since Archie’s diagnosis he with the support of parents, Lou and Gary, and his brother, Leyton, have been bravely raising money for vital research into the disease and campaigning for a drug to be made available on the NHS that will transform the lives of those that suffer with Duchenne.
The drug, called Translarna, helps sufferers of the disease not only to live longer but also to be able to keep walking for longer, was made available on the NHS in 2016 after Archie, his family and the charity Muscular Dystrophy UK lobbied government.
Archie met the then prime minister, David Cameron, whilst continuously campaigning the effectiveness of the drug and for it to be made available to Duchenne sufferers in the UK.
Across Europe Translarna was approved as early as 2014 with patients on the continent having access to the drug a year later.
Now, thanks to help of Archie, the drug will help many children in the UK suffering from Duchenne to have a better and longer life.
However, for Archie the full benefits of Translarna won’t be felt as his disease had already progressed before he had access to the £220,000 a year drug.
Archie and his family have worked tirelessly with Muscular Dystrophy UK to raise awareness and vital funding so much needed research can continue to in a bid to beat the disease.
Speaking about Archie and the battle with Duchenne, Lou said: “Archie is an amazing young man and we are exceptionally proud of him and how he has conducted himself, he shows nothing but courage and determination.
“He has campaigned tirelessly for the past few years and has achieved so much. He is simply phenomenal, our little hero.
“So far Action4Archie have raised and donated over a quarter of a million pounds and this year we hope to top £300,000 all of which goes into the Duchenne Research Breakthrough Fund.
“Myself and my family are extremely passionate about research and finding a cure for Archie and all boys living with Duchenne so we can give hope and for others not to have to go through the pain and heartache we go through everyday.
“Without our friends and family we would not be where we are today, to have achieved all that we have and be as strong as we are, we can’t thank everyone enough.”
For more information on Archie’s battle and how to donate visit action4archie.com
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