VIDEO: Campaign launched to help brave Doncaster girl say her first words
A fundraising appeal has been launched to buy a ‘speaking computer’ for a little girl struck down by a rare condition that has left her unable to talk or walk.
Bella Malloy, aged three, is trapped in her own body by Rett Syndrome – a brain disorder that has caused widespread paralysis and left her confined to a wheelchair and unable to speak.
The syndrome, which affects about one in every 12,000 girls, also causes intellectual disability but Bella is still able to learn at a slower rate.
The brave tot’s family are now hoping to raise £15, 000 for a pioneering computer system – similar to that used by disabled scientist Stephen Hawking – which would allow Bella to speak through a monitor that reads her eye movements.
Mum Elizabeth Kelly, 30, of Grosvenor Terrance, Warmsworth, Doncaster, said: “It is heartbreaking for us and Bella because she is unable to communicate how she feels. When she cries we don’t know how to make her feel better.
“Obviously kids without this condition eventually grow out of this because they can tell you, but Bella is trapped in her own body.
“This new equipment would change our family’s life. To be able to speak to her daily would be incredible.”
Elizabeth, a former council payroll officer, and Bella’s dad Marc Malloy, 30, a railways industry trainer, first became concerned when they noticed Bella was not developing her movement as quickly as other babies her age.
She now requires round-the-clock care and needs help when she eating, while the condition can also cause seizures. There is no cure but sufferers can live into their 40s.
Bella currently uses an Eye Gaze computer at Heatherwood School, which shows pictures of different items, letters and phrases and speaks out what she is looking at.
The family are hoping to raise enough money to buy one of the systems for daily use at home.
Marc said Bella’s specialist care team told the family the systems are not funded through the NHS in Doncaster.
He added: “The one she uses at school is shared out across hundreds of pupils so she doesn’t use it that often.
“But we could teach her how to use the system to an advanced level at home.
“If, for example, she was hungry she would look at a picture of some food on the screen and this would tell us what she wanted. We would be so grateful if people support us. To be able to speak to her properly would be amazing.”
The Bella’s Voice campaign was launched in late November last year and just over £2000 has been raised so far through a series of charity events, raffles and online donations.
But the family is stepping up the fundraising drive with a number of events in the coming months. A live music and raffle evening takes place at Edlington Top Club on March 21 at 7pm.
n Contact the family on 07710552702 for tickets or to donate visit http://www.gofundme.com/hz8oy8