THE first year that little Daisy Moat spent in the world was much like that of any other little girl.
Following in the footsteps of older sister Olivia, she had made all the progress expected as she hit the milestones of six, nine and 12 months.
But, seemingly out of the blue, when she was around 14 months old, her mother Joanne noticed something was wrong.
It was nearly six months before the single mum, from Stradbroke, was given the crushing diagnosis that Daisy had Rett syndrome - a neurodevelopmental disorder of the brain which affects girls almost exclusively.
The condition can cause development to stop in sufferers - and some can see functions and capabilities regress.
Joanne, aged 41, said: “Children with Rett syndrome have it from birth, but it initially appears that you have a healthy child. Their development is normal up until they reach between 12 and 18 months old - then all of a sudden this development just stops.
“Sadly Daisy lost everything. She had been learning to use a spoon and had been making gurgling noises like you expect a one-year-old to do.
“But by the time she was 14 months all of a sudden I noticed she wasn’t making eye contact with me any more and I realised she wasn’t even trying to crawl.”
Specialists at the Children’s Hospital’s Ryegate Centre for children with disabilities referred Daisy to a geneticist and she was diagnosed with Rett syndrome in September last year.
Joanne, a nurse at the Hallamshire Hospital, said: “Even now, I’ve not really come to terms with it. All the hopes and plans you have for your child’s future are just taken away from you in those words - it’s heartbreaking.”
The condition means Daisy requires round the clock care. She cannot walk, talk or feed herself - and the situation is set to stay the same for the rest of her life.
“Caring for Daisy is demanding,” Joanne said, “but she is my Daisy, regardless of her problems. I am a single mum so it can be quite hard at times - but I have got supportive family and friends.”
Now Amie Kay and others have organised a fundraising ball at the Hilton Hotel on Saturday to help buy sensory equipment for Daisy.
n Email Amie at email@example.com to donate.