Mother of daughter with rare disability writes book celebrating difference

A MOTHER whose daughter was born with a rare genetic condition has written and illustrated a children’s book to help celebrate difference.

Sarah Gannon, an occupational therapist living in Co Kilkenny, drew inspiration for her book, ‘Just See Me: seeing beyond difference’, from her seven-year-old daughter Ciara, who has Charge syndrome and is deafblind.

Sarah (39), who has more than 17 years’ experience working with children with disabilities, said she wanted to write the book to educate people and encourage them to see beyond differences.

“Charge syndrome has lots of different areas of difference, my daughter has got a visual and a hearing impairment, so she’s deafblind and she’s other bits going on with that, like a cleft lip and palate,” said Sarah.

“She also has cardiac issues and is fed via peg tube. She’s got autism and she’s got an intellectual disability.” Despite her medical needs, Mrs Gannon said Ciara is a regular little girl who wants to play and engage with other children.

In her career, Mrs Gannon has always been passionate about encouraging inclusion and reducing discrimination against children and adults with disabilities.

Since having Ciara, she said she has felt compelled to try to reduce people’s fear of disability.

“The book is just a little poem about seeing beyond her differences and seeing her for her strengths and her abilities and her potential,” she said.

“The illustrations are brightly coloured and hopefully interesting to kids with visual and hearing impairments.” All proceeds from the book will go towards the Anne Sullivan Foundation, Ireland’s national charity which supports people who are deafblind.

Sarah stressed the importance of linking up with other parents in the same position as she reflected on her experience as a parent of a child with a disability.

“It can be very isolating and very lonely as a parent of a child with additional needs because you feel like you’re the only one in that boat,” she said.

“You have to become the expert in your own child, particularly when there’s a rare condition.

“You have to educate the educators and the professionals because they’ve probably never heard of it.

“Other people don’t get it, really, they don’t, and that’s partially what the book is trying to do, help them get it a bit more.” Ciara celebrated her seventh birthday on Sunday and Mrs Gannon said she and husband Ian are feeling optimistic about their daughter’s future.

“We’d be quite sad around her birthday usually because, of course, it’s a reminder of where she should be as a seven-year-old and where she’s not. And that can be tricky sometimes,” she said.

“But this year, for the first year, we’re feeling more optimistic and hopeful as she’s made huge gains in the last year, and a lot of that is thanks to school.

“Her communication and speech is really improving and she’s very happy with life.” ‘Just See Me: seeing beyond difference’ by Sarah Gannon is available now, published by Austin Macauley at €11.60.