Eight-year-old Georgia Wainwright suffers from a rare condition called Rett Syndrome. Her dad David tells Emma Oliver how he and his wife found out about their daughter’s disorder and how they cope as a family.
Rett Syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive inability to use muscles for eye and body movements and speech.
David said he and his wife Louise didn’t find out that Georgia had the condition until she was nearly four.
When asked how he and Louise felt when they were told Georgia had Rett Syndrome, David replied: “We were devastated but there was also a sense of relief. We now knew what was wrong and we could go about dealing with it. We are quite laid back people and I think you just adapt. You have to.”
The 42-year-old said: “Georgia was born a month premature and she wasn’t hitting milestones. It got to the stage where we got concerned because she wasn’t walking and she was making babbling noises but not making progress in terms of talking. We were told at first it could be Global Development Delay but then she underwent genetic testing and that’s when they discovered it was Rett Syndrome.”
David, also dad to Phoebe, six and two-year-old Liam, said a typical symptom of Rett is seizures but fortunately Georgia has never suffered one. “That’s not to say she won’t ever have one,” said David, who lives in Loughborough. “But we feel lucky we’ve not had to experience that.”
As a result of Rett Syndrome, Georgia can’t walk and is in a wheelchair. She’s also unable to talk or feed herself. However, David said she has excellent hand and eye coordination and understand everything that’s going on around her. Georgia attends Ashmount School in Loughborough and David says she loves it. She also enjoys going to the theatre and going to watch Leicester City where her family have season tickets.
Despite being unable to talk, Georgia can communicate through facial expressions. “Georgia uses something called an Eyegaze which is a cross between a tablet and a small, portable TV and she uses it to communicate by making words with pictures,” said David. “She’s got such a happy nature, she loves life. They say she lights up the room at school.”
David, who used to run a family business buying and selling cars, now studies Specialist Sports Journalism at the University of Derby. The mature student said it is something he’s always been interested in and the support of Louise, 43, meant he could just “go for it”.
“It does require some juggling to manage university and the kids, especially Georgia. My mum helps out a lot but it’s the best decision I ever made,” said David. “I’m doing it for my family.”
David and Louise, a unit manager for a medical research company, spend a lot of their spare time fundraising for the charity Reverse Rett – with David just having taken part in the Great Manchester Run, pushing Georgia in her wheelchair round the half marathon.
David, who is a regional ambassador for the charity, added: “We just try do what we can. It’s a brilliant charity who rely on donations and after all the support we’ve received for Georgia it’s just nice to give something back. We just hope one day soon they find a cure.”
By Emma Oliver