A nine-year-old from Wiltshire is the subject of a new children’s book that gives a glimpse into what it’s like to live with a physical disability.
Carmela Chillery-Watson was diagnosed with the extremely rare LMNA congenital muscular dystrophy in 2017. Carmela experiences muscle weakness and uses mobility aids when her muscles get tired. LMNA congenital muscular dystrophy affects just 1 in a million children, who often have a limited life expectancy. There is currently no cure for this condition.
Mum Lucy, inspired by Carmela’s bravery and determination in the face of a cruel condition, penned the picture book, which is titled Courageous Carmela. The book was released on 27 October.
With simple rhyming verses, it presents a serious but inspiring message.
Artist Paul Humphreys’s vibrant illustrations bring the rhymes to life as Carmela battles against her condition, and campaigns for equality in a world built for ‘normal’ people.
Some pages highlight the setbacks Carmela faces, for example, how she can’t use the children’s park or queue for a ride at the theme park because she has a walking aid. It reads: ‘Sometimes lack of access can get in the way. Carmela feels left out when she just wants to play.’
“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.
“The idea for Courageous Carmela was born after I did a reading of my first book, Wonder Girl Carmela & Tinker the Stinker, at Carmela’s primary school. I asked the kids what other ideas they’d like for future books and this is what inspired the new one.”
Wonder Girl Carmela & Tinker the Stinker was published in 2020 and documented Carmela’s adventures with her dog Tinker.
“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.”
“I can’t wait for the book 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.”
Profits from all book sales will go to Muscular Dystrophy UK, the leading charity for over 110,000 people in the UK living with one of over 60 muscle wasting and weakening conditions, like Carmela. Helping to fund groundbreaking research to understand the different conditions better, discover new treatments and support people living with a condition.
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.
Olli Tooley, publisher at Blue Poppy Publishing, said:
“We’re getting pre-orders through from schools and it would be fantastic to see the book in all schools across the country – it really does share an important message.”
Phil Heighway, Regional Development Manager for South West, West Midlands and Wales at Muscular Dystrophy UK, said:
“We’re excited to see the new book from Lucy. It’s not only raising the profile of people living with disabilities like congenital muscular dystrophy – but also fundraising for research, in the hope of one day finding a cure for these conditions. Lucy and Carmela are together helping to give a voice to some of the 110,000 people living in the UK with muscular dystrophy.”
Carmela was recently chosen as the recipient of The British Citizen Youth Award. She is one of 24 young people from across the UK selected to make a positive impact on their communities and wider society. She was presented the BCyA Medal of Honour at The Palace of Westminster on 12 October.
Carmela earned the nickname ‘Wonder Girl’ after walking 10km every day for a month dressed as Wonder Woman back in 2020. She has raised more than £400,000 for the charity since she was diagnosed. Prince of Wales and David Beckham are amongst the public figures Carmela has met in honour of her incredible fundraising feats.
Each book is £5.99 and available to purchase at: musculardystrophyuk.org/CourageousCarmela.