Thanks for taking the time to visit my JustGiving page.

I am John's mum, Alice. I never thought i would be brave enough to ever do a skydive!! It's strange how a turn of events gives you a different mind set. I know John would have loved to do a skydive himself and will be so proud knowing that his old mum is taking the plunge!!! Life changes in an instant and to lose a child, especially to a horrific, virtually unknown disease like lafora is the cruelest blow that any family should have to endure. I honestly thought John would be here for the cure and I know it is not too far away, but sadly for John it was not his path. He must have been needed elsewhere and I can only be grateful for the time I had with him on this earthly plain. Nothing can ever fill the void that John has left and he will never be forgotten.

Hope For John was set up to raise the much needed funds into research for lafora body disease. The disease is so rare (only 200 known cases in the world) that the research receives virtually no funding and the researchers depend on family and friends to help raise the vital funds to find the cure. When you know your child has been given a death sentence, in my mind there is only one path that can be taken and that is to fight tooth and nail and do as much as humanly possible to try and save your child's life. I know John will not benefit directly now from the cure, but I personally know and have become very close to other families who have children with lafora body disease and i know what they have to suffer on a daily basis. For that reason I personally, can never give up the fight. I know John would want it this way and this will be his legacy.

The researchers have come a long long way and have made huge in roads into discovering exactly how lafora body occurs. The sufferers make too much glycogen (starch) in their bodies and Dr. Minassian has discovered a way to turn this down, thus curing the disease. Lafora is like nothing you could imagine. It is classed as a genetic myoclonic epilepsy syndrome. Believe me, that only scratches the surface of what the child has to endure. The disease takes pieces of the sufferer daily, until eventually the child is left unable to walk, talk, eat or basically move, except of course for the constant myoclonic jerks and seizures. If you have time you can go to www.hopeforjohn.org.je or www.chelseashope.org where you can find out so much more about lafora and read the stories of some of the other children who are affected.

Thank you so much for taking the time to read my page and i am eternally grateful for any donation you are able to give.

 

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