THE family of a disabled nine-year-old girl are hoping to raise £12,000 for life-changing equipment that will give her a voice for the first time.
Leah Perry, of Wilden Top, Stourport, has Rett Syndrome, a rare genetic disorder that causes severe physical and mental disability and she has never been able to speak.
With a specialist computer system, however, Leah would be able to talk and communicate effectively, using eye movements to generate basic statements through the device’s speakers.
Leah’s mother Michelle Perry said: “It is heartbreaking at times that we have to guess what she thinks, especially when we don’t know what’s the matter. It will make such a difference to be able to understand Leah and it will give her the independence to do what she wants, when she wants.
“I am convinced she is a lot more intelligent than people think and this equipment will enable her to express herself.”
Leah was born healthy but at the age of one she began to lose some of her movement and interaction skills and was diagnosed with Rett Syndrome just before her second birthday. She is now wheelchair bound, can only feed through a tube and suffers from knock-on health problems, including epilepsy, scoliosis and gastro-oesophageal reflux disease.
Despite those challenges, Mrs Perry said Leah was “very happy and always smiling” and was confident the new device would improve her daughter’s quality of life.
A Tobii I-Series computer, which is not available on the NHS, uses inbuilt cameras to track its user’s eye movements and with customisable software can become a “talker” for a disabled person.
Leah had an assessment with the equipment, which was considered successful and the family hope, in the long term, it will give her a voice.
Mrs Perry said: “It will give everyone a way to speak to her and involve us all in her life more, especially her brother and sisters. I have met a few other families with children suffering from Rett Syndrome and they told me the computers had been very useful for them.”
Leah, who is cared for full-time by her family, loves music and television and will be able to listen to her favourite songs, play games and change TV channels through the specialist device.
Leah’s family – her parents Peter and Michelle, brother Peter-Junior, two, sister Amelia, five and step-sister Shola, 14 – have already raised more than £1,000 through a curry night and shopping evening.
They will also hold a fun day on Saturday, July 19 at Bewdley Leisure Centre from noon to 4pm to boost their fundraising total. To donate, visit youcaring.com/lifeforleah and to find out more, visit facebook.com/lifeforleah or curerett.org.uk