Thanks for taking the time to visit my JustGiving page.

For the past 2 years I have taken part in the skydive for Hope For John. "Hope" was the thing that kept us all going, the hope that John would be here for the cure and the belief that he would be returned back to the John we all knew and loved. Back to being my big brother. Sadly that was not to be and John lost his long battle to lafora on 8th January 20212. Life can never be the same and it's hard to keep fighting knowing John can never benefit. BUT anyone who ever knew John would know that he would never want us to give up the fight to help the other lafora sufferers and we have come to far to stop now. This jump is for John's life not to have been in vain and so that his legacy lives on.

Lafora Body disease is the most horrific of diseases and turns a normal healthy person into an unrecognisable one. Onset is normally in the early teens as lafora is caused by too much starch being made in the body. The structures grow with the child, therefore the manifestation does not rear its ugly head until then. Unless you have lived with someone who has lafora, no-one could ever know what it does. There should be a new word for suffering. There is, it is called LAFORA. To see someone you love losing a piece of themselves daily, constant seizures, stop talking, having to be fed through a tube, not being able to walk, wash or do anything of they were able to do before only scratches the surface of lafora.

I know it's too late for John, but please help me to do what i know John would want and that is to help the other sufferers. Thank you so much for your kind donation. For further information on lafora, John's story and the latest research info you can go to www.chelseashope.org where you will see the stories of other lafora children. Also www.hope.for.john.org.je

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So please dig deep and donate now.