A GIRL ‘locked inside her body’ has been diagnosed with a rare condition.
In recent weeks, thousands of pounds has been raised for little Georgia Edwards of Ruabon to devise ways to help her communicate more easily with her parents Gavin, 28, and Katie, 26.
Three-year-old Georgia is unable to speak or feed herself.
Now the family has discovered Georgia suffers from Rett Syndrome which does not have a cure.
The neurological condition affects about one in 10,000 girls, with the family believing Georgia may have been the first in Wrexham to be diagnosed with it.
It could lead to Georgia developing seizures, breathing and eating problems and heart complications, as well as potentially leading to her requiring 24 hour care.
“It was worse than we thought,” said Katie.
“It’s a bit scary. We don’t know if she has finished regressing.
“We don’t really know what the future holds.”
Katie said Georgia suffers from the “symptoms of autism, cerebral palsy, epilepsy and severe anxiety disorders” rolled into one.
“Scientists are carrying out intensive research into Rett Syndrome and treatment is close,” added Katie.
“However, this research is funded completely by families.
“We need help. Awareness is vital in raising the funds to aid research.
“Without this, treatments could remain decades away.”
Katie said the condition afflicts seemingly healthy young girls and many become unable to walk – but Georgia currently can do so.
“It struck Georgia at around eight months,” said Katie.
“Rett has already dragged Georgia into a world of her own, stealing her motor skills, her ability to talk, feed herself, use her hands purposefully.
“However Georgia can still walk and we pray every day that this ability remains.
“Georgia knows and understands much more than her body enables her to show.
“She’s locked inside a body that cannot obey signals from her brain.”
The family has received some positive news after getting overwhelming support in their fundraising mission for Georgia, affectionately known as Georgie Pie.
Since June, more than £5,000 has been raised for Georgia and they will soon be buying eye gaze technology to help aid communication with her.
Donations from people Gavin and Katie have never met before have helped swell the total, while a tai chi coffee morning in Froncysyllte earlier this month raised more than £160.