Fund raising appeal to give our daughter a voice… Our amazing 11-year old son is giving up his voice so that his sister can gain hers, please sponsor his efforts…more details below As some of you are aware my daughter Eleanor has quadriplegic cerebral palsy and epilepsy due to a rare genetic condition, Incontinentia Pigmenti, she cannot sit unaided, walk or talk and relies entirely on those around her for support and positioning. She was also blind until 2018 when she spontaneously regained her vision in an event that science has yet to explain. Although Eleanor thinks like a normal 15-year-old, she is trapped in a body she cannot control and has been limited to signing yes and no with her left arm to answer questions since she was two. Because of the severity of Eleanor’s disability and her original blindness we were unable to identify a suitable communication system until recently. Having regained her sight after 13 years of being blind Eleanor is now at a point where she can use her vision to control an Eye-gaze communication system which will enable her to proactively communicate for the first time in her life. This is an amazing opportunity and Eleanor is extremely excited that she may soon have a voice. Unfortunately, the system costs £12,000, including the software and mountings required to enable Eleanor to access it, funding which we need to raise as a family. In order to raise funds for the system Eleanor’s 11-year-old brother has decided that he will give up his voice so that Eleanor can have a voice. To this end he will be undertaking a sponsored 24-hour silence from 8am on Saturday 8th May until 8am on Sunday 9th May 2020. We are extremely proud of our son for taking this proactive step to help his sister gain her voice. If you would like to sponsor him in his endeavour please follow the link, anything you can afford will make a huge difference to Eleanor’s future.
- henrietta kingsbury
- Maureen Barker
- Shaun Wood
- Benjamin Bunny
Fareham, South East England, United Kingdom