EVEN though she is nearly three, Daisy Moat needs 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.
The Sheffield youngster has Rett syndrome – a neurodevelopmental disorder which affects girls almost exclusively.
At first, there were no signs that Daisy was any different to her older sister, Olivia. Her mother Joanne, from Stradbroke, became concerned after 14 months and was eventually given the diagnosis.
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 the condition in September last year.
Joanne, a nurse at the Royal 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.”
She added: “Caring for Daisy is demanding 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, who works with Joanne at the Hallamshire, and other friends have organised a fundraising ball at the Hilton Hotel on Saturday.
“We want to raise some money to get her some sensory equipment to help with her development and her relaxation,” said Joanne. “Something that grabs her attention and helps to stimulate her and also something she finds soothing when she becomes agitated.”
Email Amie at firstname.lastname@example.org to make a donation to Daisy’s appeal.