9 year-year-old Carmela Chillery-Watson has a rare form of muscular dystrophy called LMNA-CMD. This means that her muscles are progressively wasting away.
But Carmela is brave and determined, and she won’t let her condition prevent her from leading as active a life as she can. During lockdown she was inspired by Joe Wicks’ workouts, and decided to start doing her own exercise videos along with her assistance dog Tinker. She also takes inspiration from the superhero Wonder Woman. Wearing a Wonder Woman outfit in her videos earned her the nickname Wonder Girl as she began raising tens of thousands of pounds for her chosen charity.
But this book is, as already stated, a fantasy in which Tinker uses her own very special magical power to whoosh them both off on magical adventures into space, and to lots of other exciting places.
Written by her mum: Lucy Chillery-Watson. The first book called 'Wonder Girl Carmela & Tinker The Stinker' published 2021 is to help spread awareness of what children dream about doing in real life but struggle due to their physical disability.
The second book called 'Courageous Carmela' published 2023 is to help spread awareness of the challenges faced as a child using a wheelchair in todays society with lack of access to playgrounds and other public places.
All profits go to Carmela's Cure Campaign to help research her life-limiting condition called LMNA-CMD.
Available at all UK book shops or online. You can also ORDER your copy straight from Blue Poppy Publishing - Wonder Girl Carmela & Tinker the Stinker – Pre-order – Blue Poppy Publishing – book publisher in North Devon
Courageous Carmela by Lucy Chillery-Watson, Paul Humphreys | Waterstones
Carmela has ambitions and dreams and one of those dreams is to be a model who can be seen on a high street shop poster to help spread inclusion fashion to help inspire young children like her.
Carmela never got accepted from her castings for any modelling jobs with the two agencies she was with for a few years, so when The Bristol Fashion Show said they would like to have Carmela model for them, she hasn't looked back.
Carmela first appeared at the show just 5 years old then soon after the Covid Pandemic, she modelled again for them aged 8yrs. Now aged 9, Carmela will be appearing on the catwalk with her assisted dog who will also be modelling an outfit!
Tickets available via The Bristol Fashion Show website
Many of the conditions supported at Muscular Dystrophy UK and Cure CMD are rare, but few are as rare as LMNA-CMD.
The condition is caused by a mutation in a key gene which leads to progressive muscle weakness of the skeletal, respiratory and heart muscles. It’s estimated to affect around 1 in a million children in the world!
But it’s also an incredibly varied condition. Different people could have the same genetic mutation but have very different severity of symptoms. Getting to know that variation is going to be essential to helping us understand and manage the condition, and potentially one day to create personalised treatments.
THE MOST RECENT MEDICAL RESEARCH PROJECT WITH SOME OF THE FUNDS FROM CARMELA'S IS ON THE BELOW SCIENCE LAB IMAGE.
ALSO - A family in USA have created a charity purely to fund medical research in to L-CMD to help enhance science in potential treatments or a cure, see further information on the current research projects via their L.C.M.D logo below.
Shop Carmela's Rare N Roar Clothing & Accessories
and help support families with a progressive muscle wasting condition.
Shop links are below the photos to order. A quarter of each item sold goes to MDUK medical research in to LMNA related conditions.
During Covod-19 year 2020, Carmela raised over £50,000 for medical research in to her life-limiting condition and with her toughest challenge September 2020 'Wonder Woman Walk' this alone raised over £17,500.
Carmela even got the real Wonder Woman's attention 'Gal Gadot' who donated thousands and sent her a personal tweet. Also the child star 'Lilly Aspell' who plays Wonder Woman as a child in the movies, sent Carmela a wonderful video message.