Anyone in search of inspiration for this Sunday’s virtual London Marathon can look to the amazing story of a six-year-old superhero. Carmela Chillery-Watson, who has a muscle wasting disease that means she will lose the use of her legs, has completed a gruelling ‘marathon a day’ challenge to raise funds for Muscular Dystrophy UK.
Carmela’s condition means she can’t walk continuously for more than five minutes, or for 60 seconds on inclines, but in September she covered a total of 300km on her specially-designed crutches.
Carmela dressed up as her favourite superhero, Wonder Woman, every step of the way and managed to fit her miles in while still attending school, physio sessions, and hospital appointments.
As news of her incredible journey spread, Carmela received messages of support and donations from the cast of the upcoming Wonder Woman 1984 film’s cast, including leading lady Gal Gadot and the young Wonder Woman actress Lilly Aspell. And when she crossed the challenge finish line near her home in Wiltshire on September 30 she was surprised by a very special visitor. Batman himself was there in his Riddler Racer to greet her and give her a spin in the front seat.
It is impossible to imagine how tough the challenge was for Carmela, but despite her age and the immense obstacles in her path, she took everything in her stride. ‘In the beginning the adrenaline was keeping us from feeling tired and sore,’ says Carmela’s mum, Lucy Chillery-Watson, who accompanied her. ‘But just a week in Carmela’s spine curvatures started causing her dizziness and nausea. At one point we thought we might have to stop for a few days to give her spine a rest.
‘When her body is exhausted her face goes pale, her lips turn blue and her movement gets poorer,’ says Lucy. ‘I have to be very careful Carmela doesn’t get to this stage as her muscles can’t repair themselves if she overdoes it. But in Carmela’s world she is indestructible and if she had a choice she would keep going until she fell. Carmela never complains about her pains and has always been committed to completing the challenge no matter what her body goes through.’
Winning the battle
Ahead of an upcoming month of physio exercises to help prevent dizziness and sickness, restore mobility to her joints and keep her spine in a good position to stop her from falling, Carmela was all smiles: ‘I loved the beach walks and getting cheered along was awesome. Thank you to everyone helping me hope to walk for longer and finding a cure for my horrible disease.’
Tragically, children with Carmela’s condition – LMNA Congenital MD – rarely live to 20, and she is raising money for Muscular Dystrophy UK to help other children and people with muscle-wasting conditions like hers. Carmela has already raised over £12,000 and you can support her though her JustGiving page.
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