I am currently putting together a charity 200 mile bike ride between Bath and Falmouth in order to raise money for a charity that is very close to my heart:
In May 2014, my best friend Ross discovered that his youngest son Stanley has the very rare terminal illness Sanfilippo Type A syndrome. The disease effects the cells in the brain and central nervous system and there is no cure. Stanley’s body lacks an enzyme which is need to “clean” the cells of sugars that build up within them. Without this cleaning, each cell effectively dies and the abilities that Stanley has learnt so far (he is just two), and those he will learn in the next few years, will be lost. There follows a period of hyperactivity, during which Stanley will sleep very little and will need constant stimulus to help him burn his energy. This will then move onto the loss of speech and other motor skills. The culmination, as more muscle control is lost, is that he will need to be fed via a tube. Finally, Stanley will no longer know anyone around him. Stanley is currently taking part in a revolutionary enzyme replacement trial at Great Ormond Street Hospital which it is hoped will slow the onset and therefore extend his life but the prognosis is still a terminal one.
Ross is attempting to raise money to help provide facilities for Stanley to enable him to receive the best possible care and make life easier for his parents and Sister (my God daughter) over the coming years. Some examples of things going on to help Stanley, and a recent Sitrep on his condition, can be found here: @[NjQyMTgzOTU5MjA4MTA3Omh0dHBcYS8vd3d3Lndlc3Ricml0b24uY28udWsvU3RhbmxleS1CYXJuZXMtYmlydGhkYXktY2VsZWJyYXRpb25zLXBvc3Rwb25lZC9zdG9yeS0yNTgxMTkzOC1kZXRhaWwvc3RvcnkuaHRtbDo6:http://www.westbriton.co.uk/Stanley-Barnes-birthday-celebrations-postponed/story-25811938-detail/story.html].
For the ride, the plan is to cycle to Falmouth in one go, beginning the bike ride at Maritime House with a finish at A&P docks in Falmouth (Steve Walden from A&P is my PoC at A&P and has confirmation from A&P Falmouth’s MD that they are willing to offer support and provide a welcoming committee). The riders will depart MH around 1500 on Friday 29th May, arriving in Falmouth mid-morning (all being well) on Saturday 30th. Once I have the numbers of cyclists, I will share thoughts on logistics, etc. around cycling through the night along with necessary paperwork including fund raising details. A preliminary route screenshot is attached.
At this time, I would like to gather a list of people who would like to join me and the few others that I have shared this with who are up for the challenge. So if you could please respond to this email at your earliest convenience to let me know if you are keen it would be much appreciated. If you are unable to do the ride, but are able to support in other ways, I would also be keen to hear from you. I currently have the promise of one potential support driver (who would meet us at a specific time and place to provide some needed fuel and potentially help should mechanical assistance be needed) but other help would be welcomed.
NOTE: This is NOT a BMT organised Bike Ride.
Thanks for reading,