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Family of Taylor Smith, seven, try to raise £11,000 for new communication computer
6:10am Monday 20th January 2014 in News
THE family of a little girl unable to walk or talk have launched an £11,000 fundraising campaign to help her communicate for the first time.
Taylor Smith, seven, suffers from Rett syndrome, a severe and lifelong neurological disorder.
It leaves her unable to walk, talk or feed herself and she requires around-the-clock care.
She also suffers from epilepsy, anxiety and apraxia – the inability to move normally.
Her mum, Stevie Close, and stepdad Lee are trying to raise £11,000 to buy her a Tobii – a computer controlled by eye movement.
The screen has different words on which she can select using her eyes, allowing her to communicate.
Mrs Close said: “It is hard as a parent. I don’t get to have conversations with her.
“To actually have a conversation will be like any other mother and daughter.
“It’s the little things that people take for granted, like being able to ask what she wants for dinner.
“I’ve never known what her favourite food is. She just gets what she is given.
“By giving her a voice, you’re giving her independence.”
Taylor was born healthily and reached all of the major milestones expected in her first year.
However, during the following six months her mum noticed she was regressing and took her to Colchester General Hospital.
Doctors said there was nothing wrong, but mum’s persistence over a number of months led to the hospital bringing in a specialist from Great Ormond Street Hospital.
Although the first test for Rett syndrome came back negative, the specialist was not convinced and sent her for more tests.
She was finally diagnosed in April 2009, aged two and a half.
Mrs Close said: “When she was first diagnosed it was devastating.
When I gave birth I was told she was a healthy baby, but then she started losing her skills.
“When you have a child you expect to watch them grow up, and to watch them ride their bike and get married – I don’t have that. We’re always just waiting for the next thing to go wrong.”
Taylor has attended Lexden Springs special school for two and a half years.
She also goes to Stepping Stones, a play and learn group for children with disabilities, in Barrack Street, Colchester.
Mrs Close recently posted on Facebook that her wish was to buy the communication devise for her daughter.
Family friend Tracey Tucker suggested fundraising for the cause, and started the ball rolling. Within days people contacted her with event ideas and money started coming in.
Mrs Close said: “So many people have come forward – people I don’t even know have been helping.
“If it carries on the way it’s going, I think we might make it.”
- To find out more, search “Taylor’s fundraising page” on facebook.com.
Our rival team tattoos
A cheeky fundraiser is just one of the events being held to raise money for Taylor.
Her stepdad Lee and family friend Gary Bradford have promised to get the logos of their rival football teams tattooed on their rears in exchange for sponsorship.
Mr Bradford, 48, a lifelong Tottenham fan, will be marked with the West Ham Hammer and the Arsenal Cannon.
Arsenal fan Lee, meanwhile, will have a tattoo of Tottenham’s cockerel.
Mr Bradford, of Mistley, said: “My family and friends can’t believe I’m doing it, but there’s not a lot I wouldn’t do to help this little girl.”
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