A FAMILY in Annascaul is undertaking a major fund-raising initiative to raise money to help their little daughter Hannah to be able to communicate with her family.
Hannah Falvey is a 2 ½ years old girl with a very rare condition called Rett Syndrome, a complex genetic disorder that affects mainly girls which makes her unable to communicate with anybody.
Some of the syndrome’s most common features are non-verbal communication, scoliosis, epilepsy, motor function difficulties, stereotypical hand movement as well as difficulties with swallowing and chewing.
Hannah lives with her family in Annascaul – her parents Nancy and Brendan and her sister Lily. With the help of an eye-gaze computer called Tobii she will be able to communicate with her family.
The Falveys have undertaken the task of raising funds to be able to buy this specialised technology with an expensive price tag of €12,000.
Tobii produces touch-based and eye-controlled computers that help individuals with motor and speech impairments lead richer and more independent lives.
Hannah has been tested for the technology and has been declared to be a perfect candidate for this new technology and has been assured that her quality of life will greatly improve because of it.
As Hannah will never be able to talk or use her hands for sign language, this type of communication will be her future language. In order to master the eye gazing skill, it is necessary to start from a young age, and so it is vital to her development.
The only limitations on the Falvey family now of course are financial. And this is why they have set up ‘A Voice for Hannah’ appeal in the Go Fund Me page.
The fundraising initiative revolves around a 70km walk that will be undertaken by two good friends of the family on Friday 12th August 2016 from Castlemaine to Brandon Point.
They will walk the length of the Slieve Mish mountains running along the middle of the Dingle Peninsula and will climb all the mountains along the way, including Mount Brandon.
Both Nancy and Brendan are so proud of their brave and kind friends to take on this challenge so that Hannah will have a chance to find her voice in this world.
To make a donation to ‘A Voice for Hannah’, and to read more about Hannah’s story, visit https://www.gofundme.com/27fn964
For more information about Rett Syndrome, visit www.rettsyndrome.ie