Story
Many thanks to all who sponsored me (although its not too late if you want to give now). It was a fantastic day. I exceeded my fundraising target and met my other target of completing the race without stopping. My time was 1 hour 2 minutes and 35 seconds.
Cheers
James
Thank you for visiting my fundraising page.
Prader-Willi syndrome is a complex genetic disorder, which is present from birth. Its main characteristics are:
- excessive appetite
- low muscle tone
- emotional instability
- immature physical development
- learning disabilities (sometimes very mild)
Just before Christmas 2006 our son Edward was diagnosed with Prader-Willi Syndrome. It's a rare condition affecting around 37 babies a year in the UK.
It's a real shock to find out that your child has such a condition and to know that their future may be very different from the one you had imagined for them. The Prader-Willi Syndrome Association were excellent at sending us information very quickly, just when we needed it. Their materials tell the stories of other parents that have been through similar experiences as well as giving practical suggestions for help and support. We felt much better knowing there is a supportive community out there. The future didn't look so bleak and we started to come to terms with Edward's future.
I hope to raise funds so that they can continue to support other parents in a similar position. The PWS Association also supports individuals with the syndrome and provides information to health professionals.
The excessive appetite aspect of the syndrome hasn't yet emerged in Edward. It usually starts around the ages of 2 - 4. Linked with low muscle tone, this can lead to rapid and dangerous weight gain. As a family we have decided to make a start now on eating more healthily and taking more exercise so that it becomes part of Edward's every day life. So another aspect of doing this run is to get fit! Exercise has never been very high on my agenda but this is going to change.
Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: Prader-Willi Syndrome Association (UK) will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.
So please sponsor me now!
Many thanks for your support.