Alice Morgan’s Parent Diary: April 2009

What can I say about John?? He will be 19 on 15th April this year (2009). He was diagnosed with Lafora Body Disease on May 16th, 2008. A day that will be imprinted on my brain for eternity. John had his first seizure when he was 15 ½, which resulted in a near drowning incident.

John was a normal, loving, independent, roguish boy like all the rest. He was always willing to help with everything from housework to building up computer tables and anything else that needed doing. He also got into quite a few scrapes!!! I wish he was still doing that………

John loved his life and had great ambitions. He has great character and had lots of friends. He had and still has a great sense of humor and gets on great with children and adults alike. His biggest love is cars and since he was knee high could tell you every make of every car. I never knew how he did this but he always got it right. He was desperate to drive, but unfortunately, unless a cure can be found for this horrible disease, that will always be a remote dream.

Some days are better than others. Sometimes John barely talks, can hardly hold a glass in his hands, can no longer read a book and takes a lot of time and energy to write a simple word. He also has to be helped to be fed and dressed. His every day living skills are getting more compromised and he needs more and more help with simple tasks. A lot of the time he seems quite unaware of it all. One Godsend is, that, at least he has now had his both shoulders operated on which stops them dislocating when he has seizures. Sometimes when I look at him, he seems so sad, it is heartbreaking and then I say something and after a pause, he gets it and lets out a huge laugh, bringing a ray of sunshine back into my heart.

I have to hold on to that hope, that one day he will be laughing all the time and a CURE will be found and John and all the other children like him and any future children, unfortunate enough to be cursed with Lafora, will never have to go through this ordeal.

I miss John.

The decision has been made not to tell John of his Diagnosis/Prognosis. It would serve no purpose. Please pray for John and all the children who are having their lives cruelly taken bit by bit.

Provided by John Sharp’s mother, Alice

Provided by: Alice Morgan