I am starting John’s diary from January this year. I have been going to do this for a long time but just couldn’t seem to get round to it for one reason or another.

It may have been to do with the fact that I kept hoping that by the time I did get round to it, John and the other children would be cured. It may have been that diaries can be lifelong……….. maybe that was the worry………. long life is not a luxury afforded to lafora children.

The years have flown by really since John had his first seizure at 15 ½ . The early days were horrendous with John going through the transition from normal healthy, boisterous, sometimes troublesome, but always loving, giving teenager to the shell he is now. I dreaded the weekends when he still wanted to be with his mates, going out and doing what they were doing. The heartbreak that only I knew, as phones were not answered, arrangements broken, phone calls to say “John has had a seizure”, watching John in sheer puzzlement whilst he tried to work out why all his friends started to “go home” after just a few drinks and I was always there to pick him up in the car and bring him home. Having to lie to him that the night was over just so he could stay safe and his friends could then carry on their night without the responsibility of having to constantly watch over him. In their own way they were really good with him, but the responsibility was too huge on them. As time went on and John deteriorated further, I don’t think anyone actually knew how to treat him. Even after he was diagnosed at 18 and the full impact of what his life was going to become hit home, I don’t think anyone can prepare themselves for the onslaught. The feelings of loneliness, desolation, worry, the depth of sadness and heartache that is felt on a daily basis, but mostly hidden and buried so that some semblance of normality can be brought into our daily lives so that hopefully, John never has to feel that he is any different from the boy he was………..

We are truly blessed that we have many loyal friends and family who I know will always be by our side. I don’t think they actually realize that they are the ones who give me Hope and Strength. For that I will always be indebted.

The Hope for John Charity was set up in October 2008. Friends, family and strangers have helped raised almost CAD$ 128,000 to date which has been sent to Dr. Minassian to aid the continued quest for the cure for Lafora Body Disease. We will never give up the Hope of the Fight.

John at 18 months old

John at age 10

John with Steph (carer)

Press

Jersey News
March, 2010

“Hope for John”

“Islanders in Jersey have turned out in their thousands to help find a cure for what is at present a terminal illness. Last year a Jersey teenager was diagnosed with Lafora Body Disease – an extremely rare condition. There are only 200 known cases in the world…”
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