Off to Rebecca House, Finley practicing his Wave goodbye

Finley practicing his Wave goodbye which he has already done to many school friends, and 2 previous houses, and due to the lack of Funding for Tranlarna he will again say goodbye to his house, school friends and do it all over again as funding for Translarna has been denied for our 7 year old. Nothing can prepare him for saying goodbye to the use of his legs, as his muscles get weaker and funding for Duchenne drug Translarna is denied in the Isle of Man, yet it is funding and being received in various posts in England, Scotland, Wales and Northern Ireland. NHS/NICE approved funding yet IOM CRC Clinical Review Committee said our boys life isn't worth it. :(