03:00PM, Thursday 09 January 2020
Photo by Megan Bennett
The godmother of a nine-year-old with a rare condition is fundraising to obtain a life-changing communication device that will finally ‘give him a voice’.
Finlay Bennett, from Twyford, was diagnosed with agenesis of the corpus callosum (ACC) at birth after it was discovered that his corpus callosum, which links the brain’s two hemispheres together, is missing.
The condition has caused global development delay (GDD), affecting his ability to talk, walk, toilet-train and eat, and has left him with various other conditions including scoliosis.
He uses a wheelchair, body brace, standing frame and stair-lift, specialised chair, and a rise and fall bath lift.
Finlay’s mother and full-time carer, Kristina Bennett said of the condition: “It’s non-verbal but he can say ‘dad, hello, hiya and oh dear’, a few things, but this makes it difficult for him to tell us what he wants.
“We get the frustration where he bites his hand because he can’t tell us what’s wrong.”
The page set up by Finlay’s godmother Kelly McCoubrey, who is fundraising as part of her Reading Half Marathon run in April, seeks to raise money to obtain an augmentative alternative communication (AAC) device, which uses an eye tracker bar fitted to a tablet.
This bar will pick up Finlay’s eye movements on the screen and will speak out for him, giving him a voice to tell others what he wants.
Kristina, whose family also help with his care, added: “He can play games on it as well, there is software to play games so he can be like a normal little boy then.
“But the main thing is for him is to be able to tell us what he is feeling, what he needs, is he in pain too, that’s the big thing because it’s a constant guessing game.”
She added: “He will be able to make decisions for himself, he can’t do anything else for himself so if he could just get that one thing it will be brilliant.
“It would help us improve his quality of life. It would help us to help him and help us to give him a voice.”
She said: “I’m just absolutely taken aback by the fact that she [Kelly] wants to do this for him.
“Whatever Kelly raises I will be eternally grateful for and Finlay will be as well.”
To donate visit www.justgiving.com/crowdfunding/kelly-mccoubrey
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