This September Kilian, Steve, Chris, Tim and some of his many friends(!) are cycling over 1000 miles from Land's End to John O'Groats.
This is why.
This happy little girl is Grace who lives with her family just outside Exeter . Looking at this picture it is hard to imagine that just a year ago, smiles and laughter were a rare event and her future was very uncertain.
At 6 months Grace was diagnosed with a very rare condition called West's Syndrome , a serious form of infantile spasms that occurs in about 1 in 5000 births affecting 400 children in the UK each year. In 90% of these children the spasms often cause severe mental and physical retardation.
She has had a pretty hellish year but so far has responded well to pioneering treatment as part of a global trial headed by BURP (Bath Unit for Research in Paediatrics) and her future now looks very bright. This incredible charity desperately needs money to continue its invaluable research into a number of conditions affecting children including Cot Death, Cystic Fibrosis, Meningitis, Epilepsy and Learning Difficulties.
To support BURP and as way of saying thank you, Grace’s father, Kilian and godfather, Steve are cycling over 1000 miles from Land’s End to John O’Groats starting on September 12th 2009.
They've got some great support in Tim Heal (half bike-half man), who is going to drag them over the rolling hills of Devon and Cornwall for the first two days. Chris Shields joins the team in Scotland and is our official translator during our final push to John O'Groats. Thanks in advance to Kilian's good old dad, Chris, and uncle, John Cooper who are driving our support vehicle. And not forgetting Kerry, our invaluable logistics manager and also Emily, Beth & Liz who have contributed so much.
Donating through Justgiving is quick, easy and totally secure. It's also the most efficient way to sponsor us: Bath Unit for Research in Paediatrics gets your money faster and, if you're a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.
They are also looking for official sponsors like Lumison (www.lumison.net) for the event to help us cover the costs of the trip itself. Emily will be re-kindling her PR skills and will ensure your company/business name is plastered over our support vehicle and clothing and used at every other opportunity!
Not the best time to be asking people for money but anything you can give will be such a great help to hundreds of children like little Gracie.
