A Wiltshire school-girl who lives with an extremely rare and life-limiting condition has become the subject of a newly published children's book.
Nine-year-old Carmela Chillery-Watson, from Devizes, was diagnosed with extremely rare muscular dystrophy in 2017 when she was only three years old, and has since learned how to navigate a world "built for normal people".
Now she will feature as the title character in ‘Courageous Carmela’, an illustrated children’s book that hopes to raise awareness of the extra hurdles that children like Carmela face on a day-to-day basis.
The book, released on October 27, 2023, documents the everyday challenges of living with a physical disability, and how Carmela overcomes them with bravery and a positive attitude.
With simple rhyming verses and stunning pictures, it presents a serious but inspiring message.
Carmela battles muscle weakness and uses mobility aids on a day-to-day basis. Her condition (LMNA congenital muscular dystrophy) affects only one in a million children, but these kids often have a limited life expectancy and there is no cure.
It was Carmela’s mum, Lucy, who penned the picture book after being inspired by her daughter’s bravery and determination.
The book, illustrated by artist Paul Humphrey, will not only raise awareness of physical disability, but all profits from book sales will also go to Muscular Dystrophy UK. This charity helps to fund groundbreaking research into treatments and support.
“I wanted to illustrate the extra hurdles that kids like Carmela face on a day-to-day basis. For her, everyday tasks like getting on the bus can be a struggle,” said mum Lucy.
“A lot of our spare time has gone into writing the new book, which is aimed at four to eight-year-olds and is perfect for bedtime or afternoon reading.”
Speaking about the book herself, Carmela said:
“I can't wait for it to come out so other children like me don't feel like they're on their own. Hopefully, trips out will become a bit easier as places are made more accessible for people like me.”
This is not the young girl’s first claim to fame though, as she was previously chosen as a recipient of The British Citizen Youth Award, and has met public figures like Prince William and David Beckham as a result.
As well as the text for younger readers, the new book will contain some additional information for adults discussing how they can help make people with disabilities feel more included.
Copies of the book can be bought online at musculardystrophyuk.org/CourageousCarmela for £5.99.
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