aware this might get the OMG MEDICAL CRACKDOWN from the dons, so I apologise in advance if this is the case, but situations noted, I think I can get away with it.
My cousin, just after his 4th birthday was diagnosed with a brain tumour on the stem of his brain, they said that he could die imminently.... but my family never gave up, and at one point they went to see people at harvard university who wanted to try a pioneering operation to try and remove the tumour. Sadly they got there too late, and they said it was impossible to operate and he died just after his 5th birthday.
The point behind all that above, is that even when one expert says 'im sorry' there are others out there who might be able to help, in some way, shape, or form.....
It might be worth us on OCUK having a search round on the internet to see if there is a similar thing that might be on offer for yourself, however, I respect that you may not want this to happen, and as such, ignore if required.
As many others have said, chin up mate, and keep yourself positive so you can enjoy life as much as you can