When I grow up! These are devasting words for Duchenne parents

When I grow up a child says, and these words are painful as you think when you grow up you are dreaming of playing for England, being a fireman, policeman and we as parents are thinking that we he still be walking, will he be healthy. How on earth I'm I going to tell him at 8-12 that he is going to lose the ability to walk. You can help by signing and helping gain access to Translarna, a drug approved in England, Scotland, Wales and Northern Ireland, but not the Isle of Man as their single boy eligible Finley Hesketh, 7 has been told the treatment is too expensive. What cost for dreams to remain about when I grow up? The drug includes funding for further research and development for further treatments for Duchenne, and further treatments will hopefully help these young children dream more.