Thanks for taking the time to visit my JustGiving page for my upcoming Marathon run. There are many reasons why I've decided to run a marathon... Not all of them are crazy!

It's about time I got healthy - and with a good incentive it appears I can be....  What better incentive could I need than my gorgeous godson Edward.

For the first 19 months of his life, Edward was growing up just like all his friends - learning to crawl, stand and run around, hiding under chairs, playing in boxes and generally making a wonderful mess. From early May in his second year, everything changed.

At first, he started having trouble getting up from the floor, and he was taken straight into hospital. The doctors didn’t know what was wrong and, after checking for some of the most likely acute causes, started to run a barrage of tests to figure it out.

During this time his condition rapidly deteriorated. Edward lost the use of both arms and became unable to stand, walk or sit unaided, and his speech soon followed. Before long, the cheeky little chap that had been sneaking under cubicle curtains to smile at the nurses was now laid in bed, trying to find positions that didn’t result in painful spasms.

These spasms would leave him unable to eat, drink or sleep properly. He’d need to be tightly strapped in his chairs, and held tightly by his mummy and daddy at night. Before long, he had to have a line put in his tummy so that he could be properly fed and hydrated, as well as deliver a heady cocktail of drugs to try and ease his symptoms and help him rest.

Having been described clinically as an undiagnosed rapid onset neurological (dystonic) movement disorder, Edward’s parents took him to see the wonderful specialist complex motor disorders team at the Evelina London Children’s Hospital, from where he was referred for a procedure called Deep Brain Stimulation (DBS). DBS has a good track record of treating Dystonia, and Edward appeared a good candidate - as soon as he was old enough.

In the October after his 3rd birthday, Edward went into surgery to have a pair of electrodes inserted deep into his brain, which are controlled from a small device near his tummy. This helps smooth out the effects of his condition by using electrical pulses to stimulate the area of the brain responsible for controlling movement, and has already resulted in massive changes for Edward.

Edward's parents have been truly amazing, and are an inspiration. Over the past 18 months, he is now back to being their smiling, happy little boy, playing with his brother and causing mischief. He only needs the straps on his chair and the barriers on his bed to stop him from throwing himself out (just because … he can), and happily sits there to eat his tea, drink his drink and play with his toys – or more often than not, just throw them all on the floor!

He’s gone from a volume of drugs that would have been too much for many adults to bear, to practically none at all - and his communication is getting better by the day. With any luck, it is even possible that he will stand and walk a few steps once again in the future, so please keep your fingers crossed.

Dystonia is a disorder that comes in many shapes and sizes, and Edward has experienced the very worst of it. DBS isn’t a cure, but at least it gives him a chance of a normal life. What is abundantly clear is that much more research is needed to assist diagnosis, treatment and support for families impacted by it.

So I’m running to do just that, and I would love your support.  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. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

Please support me - my training is going well - blisters, rainy mornings, unearthly hours, and I cannot wait to be able to say "I've run a marathon” ... Any donation gratefully received...