An Aylesbury couple are aiming to raise more than £11,000 to buy specialist equipment for their daughter, who was diagnosed with Rett’s syndrome earlier this year.
Liz and Mark Edes from Berryfields were left ‘devastated’ when their daughter Sophie was diagnosed with the illness which means she is unlikely to be able to walk or speak.
Liz said she was prompted to get a diagnosis because Sophie wasn’t ‘progressing like a normal child.’
She said: “Sophie wasn’t sitting up, crawling or putting any weight on her legs.
“Physio didn’t seem to help much and she had lots of tests and it was found she had Rett from a blood test that had been sent to a specialist lab.”
Remembering the day Sophie had her diagnosis mum Liz said: “On that day it felt like part of Sophie died.
“The future that we imagined and took for granted for our child seemed to disappear.”
Her parents are aiming to raise £11,000 for the equipment which they say would make ‘day to day life much easier.’
Liz said: “Sophie cannot talk at all.
“She used to babble but she lost that skill.
“She cannot use her hands well, so can’t do sign language.
“She is really good at choosing toys and if she wants a drink she tells us by using her eyes so an eye gaze computer would be amazing for her.”
Sophie needs help with every aspect of her life including washing, bathing, feeding and moving around.
Liz added: “She can’t be left on her own.
“At nursery she has a lovely one to one worker and she will have to go to a specialist school.”
So far the family have raised £1,100 towards the equipment.
To donate visit https://www.justgiving.com/crowdfunding/sophieedes