Thought I'd keep myself busy by setting a few casual challenges... 

> I'm running the Jersey half marathon on May 20th - CHALLENGE COMPLETE in 1 hr 41 minutes!

> Walking the Jersey Itex 'round the Island walk' 48 miles on June 23rd - CHALLENGE COMPLETE in 13hrs 51 minutes!

> Skydiving from 15,000 feet in August

Why am I doing this I hear you ask?  Please read on...

The Hope for John Charity was set up when Alice, John’s mum, found out the devastating news that John had Lafora body disease. A very rare epilepsy syndrome which affects 1 in a million children.  There are only 200 cases known world-wide.

Currently there is no recognised cure for Lafora and because the disease is so rare it is classed as an orphan disease and receives very little Government funding.  However, doctors in Canada are at a pivotal point in their research.

Lafora is an inherited genetic disease where the child inherits a copy of each of their parents faulty gene.  This causes the child to make too much starch in their bodies.  This then turns into hardening structures, which grows with the child, thus the reason it does not manifest itself until the early teen years.  Lafora affects the whole body, especially the brain, this leads to seizures, swallowing difficulties, mutism, loss of limb movement, hallucinations, dementia and eventually death.

John was a perfectly happy child, a bit mischievous throughout his childhood and early teens.  He then he had his first seizure when he was 15 ½ and he was finally diagnosed with Lafora at the age of 18. 

 Sadly John lost his courageous and brave battle on the 8th January this year and is now resting in peace at just 21.

Any small amount you can pledge will help fund research and testing to find a cure for this dreadful disease.  Thank you!

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.