Archie takes fight for treat­ment to the top

Buckinghamshire Advertiser - - FRONT PAGE - By Lor­can Lovett lor­can.lovett@trin­i­tymir­

A YOUNG foot­ball player whose bat­tle with a mus­cle-wast­ing dis­ease brought him to meet the Prime Min­is­ter is a step closer to re­ceiv­ing cru­cial treat­ment.

Archie Hill, nine, of Nortoft Road, Chal­font St Peter, who suf­fers from Duchenne mus­cu­lar dys­tro­phy, wrote to David Cameron in a bid to meet him and ask for his help.

The Prime Min­is­ter sur­prised Chal­font St Peter CoE Academy pupil Archie and his fam­ily out­side 10 Down­ing Street as they handed in a 22,785-strong pe­ti­tion call­ing on the NHS to end de­lays to break­through drug Translarna.

Archie’s mum Louisa Hill said: “We are just so proud of Archie and ab­so­lutely thrilled the prime min­is­ter took the time to stop and speak with him.

“Archie is amaz­ing, he has been fan­tas­tic to­day.

“Liv­ing with Duchenne mus­cu­lar dys­tro­phy is just so much for a nine-yearold to deal with. He knows that there is a medicine out there that could help him keep play­ing foot­ball for longer. That means ev­ery­thing to our lit­tle boy.

“There is no one in the coun­try in a bet­ter po­si­tion to do some­thing about th­ese de­lays than David Cameron. He had seen Archie’s let­ter and took a gen­uine in­ter­est in what the prob­lems are in get­ting Translarna and how he might be able to help us.”

Backed by the Mus­cu­lar Dys­tro­phy Cam­paign, Archie was among scores of peo­ple who gath­ered at West­min­ster on Wed­nes­day, Jan­uary 14 to ap­peal for ac­cess to Translarna, which could help keep chil­dren with the dis­ease walk­ing for longer.

Archie added: “I was happy to meet the prime min­is­ter and to give him my let­ter. He was very nice and asked me about my foot­ball team.”

Chil­dren cur­rently must be able to walk to be el­i­gi­ble for the drug. There are fears many chil­dren will miss out through los­ing their abil­ity to walk be­fore NHS Eng­land makes the drug avail­able.

The fam­ily say the prime min­is­ter promised to look into the is­sues sur­round­ing Translarna and to speak with the Sec­re­tary of State, Jeremy Hunt MP, in or­der to speed up ac­cess to the drug through the NHS.

There is no

one in the coun­try in a bet­ter po­si­tion to do some­thing about th­ese de­lays than David Cameron”

KNOCK KNOCK: Archie Hill out­side 10 Down­ing Street with his pe­ti­tion; (left) with his fam­ily talk­ing to David Cameron

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