Stuart Sykes Aylesbury to Edinburgh ride - 16th - 20th June.
I wanted to do something
challenging this year, so decided to cycle 500 miles from Aylesbury to Edinburgh
from 16th to 20th June. I couldn't do that without doing it for a just cause,
so I chose The Pace Centre, a charity for children with physical disabilities,
such as cerebal palsy.
I went to visit The Pace Centre a few weeks ago and met children like eleven
year old Jason, who has attended PACE since he was a baby. Jason, in clinical
terms has Quadreplegic Athetiod cerebral palsy. In every day life that means
his physical disability affects all his body; uncontrollable muscle spasms and
unpredictable movements of all four limbs. He has very low muscle tone making
his body very floppy and unable to work against gravity but on effort his muscles
tighten and he can be as stiff as a board. Additionally Jason has
no speech. As a baby he was unhappy and miserable most of the time. When he
first attended PACE he was unable to communicate, have any functional use of
his hands/limbs, sit or walk. The only thing he could do was lie on his back.
Jason is now a happy, motivated young man with a lovely smile and a brilliant
sense of humour everyone who comes into contact with him cant help but
love him. Nearly ten years of hard work has enabled him to do facilitated walking,
sit unaided for a short while, roll from his front to his back, help dress himself,
use a rocker switch with his hand to access Information and Communication Technology
(ICT), and use his hand to operate his electric wheelchair.
Although he will never be able to speak like most people, he has learnt to eye
point to communicate with his symbol book and has proved beyond all doubts that
he is very academically able. Recently he has started to use a state of the
art Voice Output Communication Aid (VOCA) using the eye gaze system
(a part of Jasons body he can accurately control is his eyes). This will
open a whole new world for him. And this is just the sort of equipment the riders
to Edinburgh will be raising money for.
Overall, the 25 riders are trying to raise in excess of £30,000 for a
range of communication aids for the kids at PACE. These aids vary from Chewy
Tubes costing £5 each (which allows a child to practice biting and chewing,
thus developing jaw motion) and Communication Vests costing £14 (worn
by staff to create an instant secure background for communication symbols) to
Computer Programmes costing £147 (that allow children to develop their
imagination and create a narrative) and super interactive hardware such as the
Tellus 3 plus PCS software and Touchscreen (£4-5k) and the My Tobii System
(£16,500) - a communication aid that allows the maximum independent communication
across home, school and community in a variety of positions.
I'm doing this ride after hearing about the great work of PACE. I've seen first
hand what amazing work PACE do and how the dedicated staff can facilitate children
like Jason and give them the determination to do things previously thought impossible.
The way I can help PACE, is to try and raise as much money as possible. Children
at PACE have to put in a lot more effort to do everyday things I take for granted
and doing this ride might enable me to get an idea, well for 5 days anyway,
how much effort children like Jason put in every single day.
So on June 16th, I'm cycling 500 miles in 5 days from Aylesbury to Edinburgh
and wondered if you'd like to support me by taking a minute to visit and sponsor
me to do this ride at http://www.justgiving.com/stuartsykes
or letting me put your name down on my sponsorship form for an amount (email
sykes.stuart@gmail.com )?
More details
on PACE: http://www.thepacecentre.org/cycle.html
You'll be able to track us live by visiting http://www.trackr.eu/user/pace2edi
from Tuesday 16th June at 08:30am!!!
Thanks for
any support.