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Gethin’s deafblindness

Photo: Gethin's story

There’s never a dull moment for 11-year-old Gethin, who’s proving that multi-sensory impairments needn’t be a barrier to enjoying life.

Jane and Kevin’s son Gethin loves climbing, swimming, his iPad and playing with his older brothers. He’s sociable, adventurous, and is always trying new things. Although he’s deaf and blind, mum Jane proudly lists his hobbies and the things he enjoys most.

“Climbing is a new thing for Gethin,” Jane reports. “The staff at the local climbing centre have been bowled over by what he can do, and it just reinforces what I’ve always said – Gethin doesn’t get less out of activities than other children, he just enjoys things in a different way.”

When Gethin was born, his vision loss quickly became apparent. “His reactions were different from other children’s. At eight weeks the doctors confirmed that Gethin has Leber’s congenital amaurosis (LCA), a rare type of eye disease that’s left him blind.”

But Gethin’s deafness was less obvious. “He was such a sociable and happy baby. He was always laughing and loved any kind of interaction, so it didn’t occur to anyone that he may have a hearing loss as well.

"We discovered it only by chance. When he was 18 months old he was having an MRI scan, and the doctor suggested they do an ABR (auditory brain response) test at the same time. When the results showed that Gethin was profoundly deaf, everyone was very surprised.

"Gethin doesn't get less out of activities than other children, he just enjoys them in a different way."

“Since then we’ve come so far, and we now know exactly how Gethin likes to communicate and what he enjoys. He loves lights, and we have lots of different types for him at home – laser lights, disco lights, UV lights. They help him to get the most out of the little vision he has.

“We’ve also discovered hand under hand signing. We’ve only been using this for the last two years, but it’s transformed things for us. Gethin can feel us signing whole sentences, not just individual words. He’s recently started to sign a few words independently, which is incredible!”

Watching brothers Euan, 16, and Aled, 15, playing with Gethin, it’s obvious that they’re very proud of him. “Everyone comments about how brilliantly the boys interact with Gethin. If Gethin is able to copy a picture Kevin draws for him, or if he signs independently, the boys see what an amazing achievement that is. The relationship they have is really special.”

But things are by no means easy for the family. “People’s attitudes can sometimes make things difficult. If people feel they can’t look our way or ask questions, that’s harder than if they were open and honest.

"Gethin has a bright yellow wheelchair with eye-catching wheels, so he’s very noticeable! His chair is a way of inviting people to find out more about what life is like for Gethin.”

"I find myself wondering what the future will hold for him."

Gethin’s transition to secondary school has prompted Jane to think about what’s next. “A primary age child with complex needs can be treated like a child, but now that Gethin is older we may need to start communicating with him in a different way.

"Gethin appreciates the world in a very sensory way, and loves having his back tickled, for example. People stare at things like that now he’s older. We’re starting to think about how Gethin will cope with transitioning to adulthood. I find myself wondering what the future will hold for him, but with the right support in place I’m certain that he’ll continue to enjoy life, whatever it brings."