Hi everyone,
My nephew may have this and we are absoloutley distraught by the news, even more so that there is no cure. Please please sign this petition, and verify through email as the closing date is august, it only takes a miinute and will hopefully set the ball rolling in finding a cure, it is also to raise awareness for others.
http://epetitions.direct.gov.uk/petitions/14427
thank you so much and the votes dont immeadiately get counted as the page is refreshed every few hours
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