A fundraising campaign has been launched to pay for a specialist walking machine – to get a five year old girl on her feet.
Little Edith Andres – who is described by her parents as their ‘little unicorn’ because she is ‘rare and unique’ - is non mobile and non verbal and can only stand supported by a frame
Now her parents Kirsty and Dan have launched a fundraising drive to raise the £16,000 needed for a specialist Innowalk machine.
The machine will enable Edith to stand and walk independently.
When Edith was born, medics initially thought all was well.
But at five weeks old she remained jaundiced and was sent to Hengrove Hospital for tests.
The tests showed her levels of bilirubin were high and she was referred to Bristol Children’s Hospital for further investigations.
An MRI scan showed that part of Edith’s brain had not developed properly, which was likely to have been caused by a genetic disorder.
However the exact genetic disorder which caused Edith the issues has yet to be diagnosed.
Mum Kirsty, Edith’s full time carer, said: “Despite many tests, we still haven’t come up with a definitive cause of Edith’s problems.
“Essentially because the pathways in her brain are not protected it causes her muscles to be very floppy and she has been diagnosed with hypotonia.
“This means she cannot function or walk like other children.
“She is such a lovely, cheeky character and a real clown who cracks me and her dad up every day.
“She has an infectious laugh and is always smiling.”
Edith, who is fed via a tube into her stomach, learnt to sit up when she was two and a half years old.
“We would spend hours every day with her trying to teach her how to learn and sit,” said Kirsty.
“She’ll fall and roll over and we would help her up again.
“She has managed to strengthen her core so we know she is capable of training her muscles, but it is very intermittent.”
The specialist machine would essentially walk for Edith. She would use it at home and at Baytree School in Weston-super-Mare which she attends.
“Currently she can only stand in a frame, which gives her a static position,” said Kirsty.
“But Innowalk machine would essentially move her legs for her, giving her the sensation of walking.
“We are hoping that this will stimulate her brain and muscles and prompt a memory of walking.”
Kirsty and Dan say the machine will also provide Edith with health benefits in the long term.
Kirsty said: “Because of her condition, Edith cannot run around and exercise like other children.
“We are concerned that this will led to secondary health problems in the future.
“We want to make sure she stays as healthy and fit as possible.”
The family has raised nearly £4,000 so far including a grant of £2,000 from the Pill based Morgans Charity.
“This machine would completely change Edith and our lives," said Kirsty.
A Go Fund Me page has been set up.
Anyone who wants to support the appeal can do so at https://www.gofundme.com/one-step-at-a-time-edith039s-hope-for-the-future.
Kirsty also blogs about her life with Edith which can be found at https://lifewithlittlee.com.
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