Esme developed normally until the age of two, but then Rett Syndrome set in. Rett sufferers have a gradual loss of control over their movements, and eventually the only part of the body that can be moved under control is the eyes. Despite the failing body, brain development is normal in those with Rett.
Obviously the family encounters difficulties on a regular basis - but one thing that would make the family and Esme happy is to have a way that she can communicate, and hearing what Esme has to say, both now and in the years ahead.
Luckily technology is around that will help. An 'EyeGaze' computer is available that will detect and track Esme's eye movements and translate those tiny moves into spoken words.
This technology doesn't come cheap. Chris Zaremba, a presenter on MarlowFM, has been raising money to help fund the purchase of this computer plus associated training. The computer itself has now arrived but the training and ongoing costs are substantial.
Chris has been running sponsored marathons to raise the first £4000 - which has been achieved - but it's now time for something new to get to the ultimate goal.
The latest event to raise funds towards this is the ‘Voices For Esme’ concert being given by members of Weybridge Male Voice Choir in St. Mary’s Church, Wendover on Saturday 7 November, starting at 7:45PM.
It is hoped as many people as possible can attend what will be a spectacular evening as the choir, one of the very best in the South East, come to Wendover for one night only to raise the roof of St. Mary's. The choir will give all they can of their 'Voices For Esme' on that night - so that Esme herself can get a voice as well.
The members of the choir are travelling and giving their time without any charge in order that every penny raised goes to the fund. That's very generous of them - please be generous too and let's see if we can get Esme that voice in time for Christmas!
Tickets are £10 each, and available at www.bitly.com/EsmeTickets and select 'Voices For Esme'.
If you would like to donate to the cause without buying tickets, please donate on this page.
Thanks so much on behalf of Esme, her family and the Weybridge Male Voice Choir. Your ticket purchase or donation really means a lot to all of them.
- Alison Cronin
- Weybridge Male Voice Choir
- Ed Weybridge MVC
- Richard Makepeace
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