Boy cam­paigned for mus­cu­lar dys­tro­phy drug to be made avail­able

Buckinghamshire Advertiser - - FRONT PAGE - by Tom Her­bert tom.her­bert@trin­i­tymir­ror.com Twit­ter: @TRHer­bert

10 year old cam­paigner Archie, re­ceives na­tional award at House of Com­mons af­ter pe­ti­tion­ing Prime Min­is­ter

A TEN-YEAR-OLD was re­warded for his tire­less cam­paign­ing work at a House of Com­mons cer­e­mony on Mon­day night.

Archie Hill, from Ger­rards Cross, re­ceived the award for his work with Mus­cu­lar Dys­tro­phy UK to al­low ac­cess to drug Translarna.

Translarna is a drug which could al­low boys like Archie – who suf­fers from Duchenne mus­cu­lar dys­tro­phy – to walk for longer.

Nom­i­nated by Chesham and Amer­sham MP Ch­eryl Gil­lan, he was awarded most in­spi­ra­tional cam­paigner on youth is­sues at the Kids Count In­spi­ra­tion Awards Cer­e­mony.

In Jan­uary, Archie vis­ited 10 Down­ing Street, meet­ing the Prime Min­is­ter to present a pe­ti­tion – signed by more than 22,000 peo­ple – call­ing for ac­cess to the drug.

He was one of six boys who de­liv­ered hand­writ­ten let­ters to David Cameron in June, in a fur­ther plea for a pos­i­tive de­ci­sion on whether the NHS would ap­prove fund­ing for the drug.

Archie’s story and de­ter­mi­na­tion has been an in­spi­ra­tion to peo­ple, in­clud­ing Eng­land and Arse­nal foot­baller Jack Wil­shere, who has since be­come an am­bas­sador for Mus­cu­lar Dys­tro­phy UK.

Speak­ing about his award, Archie said: “I’m re­ally happy to re­ceive this award. I don’t just do this for me, I do it to help all the boys with Duchenne. I just want to keep play­ing with my friends in the play­ground at school.”

Mrs Gil­lan said: “Hav­ing met and cam­paigned along­side Archie and his fam­ily, I thought in­stantly of him when I learned of th­ese awards and nom­i­nated him. He is a very wor­thy win­ner. This fan­tas­tic young man has been a tire­less cham­pion for chil­dren with Duchenne mus­cu­lar dys­tro­phy.

“He should be an in­spi­ra­tion for all chil­dren for his de­ter­mi­na­tion and ef­forts de­spite his own con­di­tion.”

Robert Mead­owcroft, chief ex­ec­u­tive of Mus­cu­lar Dys­tro­phy UK, said: “We are proud Archie has been recog­nised with this award. Speak­ing up can be a very hard thing to do, par­tic­u­larly at such a young age.

“From writ­ing to the Prime Min­is­ter, to be­ing in­ter­viewed on na­tional tele­vi­sion, Archie has had the­courage­and­con­fi­dence to tell peo­ple about a dif­fi­cult chal­lenge in his life. Archie is wholly de­serv­ing of this award.”

De­spite his mo­bil­ity wors­en­ing as he gets older, Archie never gives up on his cam­paign­ing ef­forts.

Mus­cu­lar Dys­tro­phy UK sup­ports the 70,000 peo­ple in the UK af­fected by mus­cle-wast­ing con­di­tions and their fam­i­lies, as well as fund­ing ground­break­ing re­search into treat­ments.

In­spi­ra­tional: Archie Hill, from Ger­rards Cross, re­ceived a na­tional award at

a House of Com­mons award cer­e­mony

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