A MOTHER has made a desperate appeal for help as her daughter’s rare and debilitating medical condition has taken a turn for the worse.
Four-year-old Georgia Edwards suffers from Rett syndrome, which affects one in 12,000 females.
As a result, she also suffers from global development delay, which is a failure to reach developmental milestones in a number of areas, including speech, motor, social, emotional and cognitive skills.
In the case of Georgia, from Heol Offa, Johnstown, she is unable to speak, communicate easily or feed herself.
Now after losing the use of her hands, a further cruel twist has seen her lose the ability to walk.
Her mum, Katie Edwards, said: “We thought she had come through the worst of the regression, but she has deteriorated in the last month and it’s difficult to come to terms with.
“She has just lost her ability to walk in the space of a week.
“We used to hold her hand and she could wobble along the floor, but now she can’t and she has lost her independence.
“By the age of four, those with the condition are usually through the worst of it and when she turned four earlier this year, we hoped she was too.
“But it’s proving an impossible condition to judge.”
“If she had been born that way it wouldn’t be as hard to take, but because she had some independence and it’s been taken away from her, it’s heartbreaking to watch.
“She is also being fitted with a feeding tube in the next few weeks because she is struggling with her food.”
“The equipment she needs is changing all the time.
Mrs Edwards added: “As parents, there is little we can do. Rett syndrome will take whatever it wants from her.
“All we can do is fundraise for whatever she needs to make her as independent as possible and give her the best quality of life.”
Leader readers donated money after the paper highlighted Georgia’s plight a year ago.
Now Mrs Edwards, 27, and her husband, Gavin, 30, hope to raise £2,000 more to cover the cost of a year’s worth of physiotherapy and hippotherapy fees.
They are also trying to raise enough to get Georgia a walker and a 24-hour posture care chair to help her stand-up.
As part of the fundraising, Mr Edwards will take part in the Erddig 10km run in September.
A fundraising night is also being held at Brymbo Cricket Club on October 18, featuring former Liverpool and West Ham footballer Neil Ruddock, comedian Josh Daniels and local band Movin On.
There will also be a DJ and an auction.
Doors open at 7pm for a 7.30pm start, and tickets are £22.
Donations can also be made through the fundraising campaign website at www.georgiepiesbrighterfuture.co.uk
Meanwhile, tickets are available for the event online at www.wegottickets.com
/event/286615, by calling Mrs Edwards on 07715 667253 or emailing firstname.lastname@example.org.
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