Shepherdswell family appeals for donations to fund eye tracker system for Daisy who has Rett Syndrome
Published: 00:01, 27 February 2015
A family is fundraising for a device that will help a physically disabled toddler communicate with her eyes.
Daisy Caister, a two-year-old from Siberts Close in Shepherdswell, was diagnosed with Rett syndrome last spring.
The condition is a gene mutation affecting the development of the brain, mainly in little girls.
It means that some will never walk or talk, but those who can will eventually lose those abilities.
Daisy’s mother, Meena Caister, a former secondary school teacher, said: “The diagnosis was devastating.”
"I wanted to try for a little girl. I imagined all of these things we would do but I feel like they have all been ripped away"- Meena Caister
She is now raising cash to get her little girl the help she needs.
Mrs Caister said: “I have two older boys, they are 11 and 13-years-old, and I wanted to try for a little girl. I imagined all of these things we would do but I feel like they have all been ripped away."
Daisy cannot sit up unaided and can only interact via the flickering of her eyes, indicating a ‘yes’ or ‘no’ answer to questions.
She occasionally uses the word “yeah” and reacts positively to Ed Sheeran’s song Thinking Out Loud and Shake it Off by American pop star Taylor Swift.
Mrs Caister and her husband David have started fundraising for a eye tracker called Tobii Eye Gaze technology.
The device traces eye movements to enable a better understanding of behaviour.
They have already raised nearly £3,000 but need another £10,000 to afford it.
It is not yet known if Daisy is eligible for the treatment, as she will need to have an assessment to see if the machine will track her specific movements.
If not, the money will go towards a similar system or specially adapted equipment that will be needed as she gets older.
Anything extra will be given to a charity called Reverse Rett which conducts research to speed treatments and a cure.
Mrs Caister said: “There is always going to be something else she needs. We are paying to extend the house so that she can have a bigger room and bathroom.
“There may be another system she can have, there are lots of different technologies.”
By reaching out to others for financial help, the family also hopes to raise awareness of the condition.
“When she was first diagnosed I don’t think I had met anyone with the syndrome and none of my family knew what it was,” she said.
“I do try and tweet a lot of celebrities; to get a celebrity to mention Rett syndrome would be quite good.”
Fundraisers have taken place at the East Kent Railway and between Mrs Caister’s group of friends. In May, fitness instructor Karyn Matcham will be hosting a Zumbathon, with all proceeds going to Daisy’s fund.
Mrs Caister is also giving away two tickets to see Take That at the O2 arena in London on Thursday, June 4 to those who enter her draw before Friday, May 22.
For more information, or to donate, visit: www.gofundme.com/bvkrxg.
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