Finley and his dad at sports day

If we can do something, we must do something – Finley Hesketh

Posted: July 12, 2016

Finley HeskethI’m sat here with a lump in my throat because I’ve been looking through the Finley’s Tracks Facebook page https://www.facebook.com/Finleys-Tracks-1436280699981313/?fref=nf 

Finley’s mum and dad upload videos and news stories on a daily basis and it’s inspiring to watch the little man race against his sister whilst struggling to do so but never giving up.  It’s heart warming to see him on holiday having a great time with his family and it’s humbling to see how the people of the Isle of Man have begun to rally around this innocent little boy with the green/blue hair and the cutest smile.  I challenge anyone to watch these video clips and say this little trooper doesn’t deserve medication that can improve his quality of life.

Finley who is 7 years old has Duchenne Muscular Dystrophy – an incurable condition which sees muscles gradually weaken.

“His parents said that in a few years’ time he could lose his ability to walk and by the time he is a teenager the condition will probably start affecting his lungs and heart.

His mother, Kirstie told the BBC: “His life expectancy is late 20s, early 30s so he will probably die before us – that’s a scary prospect.”  – http://www.bbc.co.uk/news/world-europe-isle-of-man-36849840

Finley’s quality of life would be greatly improved with the use of ‘Translarna’, a drug which could prolong his physical independence but the Isle of Man government have refused to pay for the drug.  It is expensive, between £200K and £250K per year but as I’ve stated in the title of this blog, if we can do something, we must do something.  I won’t be letting this go and if I am elected, I will fight for a drug that a brave little boy deserves.

 

Video of Finley racing his sister.  https://www.facebook.com/1436280699981313/videos/1756319861310727/

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