BUSBY mum Debi Hall is still fighting for a cure for the disease which has left her daughter unable to walk or talk.
Last year, The Extra reported that Debi had launched Help Me Communicate — a charity for children suffering from Rett syndrome, as well as their families.
It’s a condition that the nursery nurse knows all too well, as five-year-old Shona was diagnosed with it in 2008.
The highest level of autism, it means that Shona is unable to walk, use her hands or talk— and yet she understands everything around her.
Debi told The Extra: “It’s an awful syndrome and so upsetting, as she’s locked in her own body with perfect brain function.
“She has started to use eye gaze and we’re hoping to raise money to buy her very own Tobii eye gaze computer — hopefully this will give her the ability to speak to us”.
Now, Debi is dedicated to helping her daughter and fellow sufferers, raising awareness of the illness in the hope of someone finding a cure, as well as offering relief for families coping with it.
She continued: “The one thing we all have in common is the communication difficulties: no speech, no functional hand to use for signing.
“We raised enough money in the first six months to fund our first touchscreen device, and we’re discovering which systems work for the applicants.
“I love that I can help the Rett community and hopefully one day my baby will talk for herself”.
Shona now attends Isobel Mair school while her mum organises events in her spare time, to aid over 30 young girls across Scotland who also live with the condition.
Already, a child in Dundee has been able to buy the same Tobii machine, and three more funding requests are in the pipeline.
Debi added: “It’s lovely to be helping the Rett community in Scotland, and knowing these girls are being given opportunities.
“I just want Shona to live a long and healthy life like any other girl. Our children are being snatched from us too early and we aim to give them the best quality of life and to help them communicate”.
Help Me Communicate is hosting a princess and favourite character party at Netherlee church hall this month in the hope of raising more funds, and all are welcome along.
The event takes place on Saturday, April 28, 2.30-4.30pm, with a DJ, games and prizes, and a visit from Peppa Pig. Tickets cost £5, and are available by e-mailing firstname.lastname@example.org.
A charity golf day will also be held at Williamwood club on June 15, and fellow members can find out more from Shona’s grandfather, Peter Hall.
n For more info on Debi’s charity efforts, visit www.helpmecommunicate.net.