Ready to rock for Holly Gigs help girl with rare condition
IMAGINE not being able to say anything and having virtually no control over any of your movements. That is the reality of life for 10-yearold Cheltenham girl Holly Boyes because she suffers from a condition called Rett Syndrome.
It is a rare genetic disorder that affects brain development and results in severe physical disability.
Holly seemed like a normal child at first but things quickly went downhill for her and she has only ever said a few words in her life - and that was many years ago.
Now she can only communicate through an eye gaze machine, a computer that picks up on what she is looking at and speaks words for her.
The technology is relatively new and Holly’s parents, Emma and Adrian, say the process of making it work well for their daughter is very much in the early stages.
They still use simple ‘yes’ and ‘no’ cards to work out what she does and does not want.
Emma does not work because she has to care for Holly all the time, apart from the six hours a day she spends each week day as a pupil at Bettridge School in Cheltenham.
She needs constant care, not even being able to eat or drink herself. That has to be given to her through a tube that goes into her stomach.
Life can be incredibly tough for Emma and Adrian, not least because they see how frustrated Holly can become because of her situation. She was diagnosed with Rett Syndrome when she was two-and-a-half.
But Emma and Adrian are determined to remain as positive as they can and do the best for their daughter. They live with her and their two-year-old son Charlie in a specially-adapted house on the edge of Pittville.
Emma said: “It’s really hard, really frustrating and emotionally draining.
“But I love her because she’s Holly. There are ups and downs. There are moments where she’s happy and content but then something comes up.”
One of the physical problems affecting Holly is epilepsy. It leads to seizures that can stop her breathing for minutes at a time.
Another issue has been chest infections, with Holly needing hospital treatment five times last year because of them.
Emma said she had to dress her daughter, wash her and perform the smallest of actions for her - such as changing the channels on the TV.
Rett Syndrome is like Locked-in Syndrome but whereas people with the latter suffer from paralysis, those with the former do not. Their movements are restricted, with Holly’s being particularly severely limited, but not as a result of being paralysed.
Adrian, who works for Coca-cola, said Holly’s illness made life tougher than people could imagine but he was focussed on helping her and other Rett Syndrome sufferers.
Which is why he organises an annual music festival every year in Cheltenham, with the money helping to cover the cost of his daughter’s care and go towards Rett Syndrome charities.
This year’s event will see Neville Staple, former front man with The Specials and Fun Boy Three, perform with his band at the Frog and Fiddle on March 2.
The gig has sold out but people can attend free acoustic sessions with various bands at the Brewhouse & Kitchen in the Brewery Quarter, between noon and 6pm.
Holly Boyes, from Cheltenham, who has Rett Syndrome and can only communicate with her eyes