Brave Westhoughton youngster has rare Phelan McDermid Syndrome that affects fewer than 800 people in the world
LIKE most tiny tots, Charlie Kay is happy little boy who loves nothing more than splashing about at his swimming lessons.
But this brave little four-year-old is also living with a rare syndrome that affects fewer than 800 people worldwide.
Charlie has Phelan McDermid Syndrome — a condition closely related to autism affecting the rate of muscle development, balance and communication skills.
His mum, Kathryn Kay, first suspected something might be wrong with Charlie when he was about six months old.
Mrs Kay said: “We thought there might be something wrong because he was reluctant to sit up and I can remember watching other babies and thinking Charlie was not doing the same things. I know you’re not supposed to but you can’t help but compare.
“Because Phelan McDermid Syndrome is really rare we don’t know what he will be able to achieve so we will have to wait and see.
“But he’s achieving more and more all the time and has recently started to swim. He’s doing really well.
“It has been such a big journey for us because it affects so few people. We have met up with other families who have children with the same syndrome and that has really helped.”
Charlie, who has just started his first term at Greenfold Special School, communicates via picture-exchange communication system (PECS) and sign language. He also is a big brother to baby Jude, aged four months.
Mum Kathryn added: “We know he will have learning difficulties and that it affects his balance. He also cannot walk great distances. It is a life-long syndrome and I think the biggest thing is that he will never be able to talk.
“He finds things like copying actions quite difficult but he is still our happy little boy. He especially loves women and going to the park with his brother.”
Charlie has been learning to swim at the Water Babies class at the Jubilee pool in Bolton.
Joanna Jones, who teaches Water Babies swimming lessons, said: “I am so pleased that we have been able to help Charlie develop his strength with swimming.
“Charlie has done fantastically well, and it’s great to see him swim and splash confidently in the pool now. It’s these things that make my job so worthwhile.”
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