I am doing a skydive to help raise money for Hope for John, a charity made to fund the research to find a cure for Lafora Body Disease.

Every cause is a good one but this one is in desperate need of your support and could really make a difference to an individual’s life. A Jersey charity has been set up to raise money for research into a fatal brain disease.

Hope for John has been set up by the family of my cousin John Sharp who was diagnosed with Lafora disease on 16^th May 2008, the most severe and degenerative form of epilepsy affecting young people.

This vicious brain disorder is characterized by involuntary muscle jerking and twitching that affects the entire body, recurrent seizures and a decline in intellectual function. The signs and symptoms of the disorder manifest themselves in previously healthy individuals in late childhood or adolescence and worsen with time. Affected individuals also experience occipital seizures, which can cause temporary blindness and visual hallucinations. Over time, the seizures worsen and become more difficult to treat.  As the condition progresses, a continued loss of intellectual function (dementia) impairs memory, judgment, and thought. Affected people lose the ability to walk and eat and perform the activities of daily living by their early twenties, and they ultimately require constant care. The ordeal continues for patient and family worsening only till death before aged 25.

The researchers are in a race against time to find a cure for this disease. Because the disease is so rare, they currently receive no government funding. However, they believe that a cure can be found if they have the money available. Researchers for Lafora disease have managed to cure the mice that had been used for the research and now hope to raise enough to apply this new technology to humans.

John spends a lot of his time in hospital now and is unable to get out of bed. He is in desperate need of your help and we are all waiting for the day that he will be able to get up and walk and talk and be a pain in the ass again! I miss my little cousin so much and can't wait for the day that the cure is available and I thank anyone who donates for helping us get closer to it.

Alice (Johns mum) and his family and friends still have hope that a cure can be found before it is too late. So please help give this tragic story a happy ending by donating whatever you can.

 

Thank You

 

 

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