Dorset 10-year-old completing 100-mile Jurassic Coast challenge today
Carmela Chillery-Watson has an incurable muscle wasting disease
A 10-year-old girl from Dorset, who has an incurable muscle wasting condition, is completing a 100-mile 'Superhero' challenge for Julia's House Children's Hospice today.
Carmela Chillery-Watson grew up in Wiltshire before moving to Wareham, and has a rare and incurable form of muscular dystrophy, but that's not stopped her walking and wheeling along the Jurassic Coast.
Her condition is progressive and life-threatening and there’s currently no cure. Over time it has caused Carmela’s muscles to waste away. She’s lost all her shoulder muscles, so it’s hard for her to lift her arms or hold her knife and fork, and her hips have also become weaker, which affects her stability.
Carmela has been receiving care from Julia's House.
She's been taking on the challenge dressed as her favourite superhero - Spiderwoman, alongside her mum Lucy and dog Tinker, who has a special dog carry-bag on the back of Carmela’s wheelchair.
The challenge started on Sunday 16th June and Carmela has covered around 7.1 miles each day.
She's aiming to raise £10,000 for the charity.
Carmela received a congratulatory video message from the charity's patron, actor Martin Clunes.
He was invited to join her on the challenge by charity Chief Executive Martin Edwards, but Mr Clunes was in Greenland, meaning he was unable to join Carmela.
Instead he shared a video message in front of an iceberg.
He said: "I just really wanted to say, congratulations to you for doing this. Julia’s House is the best possible cause you could be doing it for. And good luck – go girl!"
“Carmela faces so many challenges in her life, but she’s never let them hold her back,” said mum Lucy. “She’s raised thousands of pounds for charity, met several high-profile celebrities, including the Prince of Wales, and received lots of awards for her bravery and fundraising efforts.
“Julia’s House is like our second family,” continues Lucy. “I don’t get help from anywhere apart from Julia’s House, and I would feel very lost without them. Carmela’s daddy works away during the week, so it’s just me and Carmela 24/7 and it can be full-on. With everything I go through and see with Carmela and her condition, it’s an emotional rollercoaster. Like any mum, I need time-out for myself, even if it’s just for two or three hours.
“We don’t think or talk too much about what might lie ahead for Carmela,” adds Lucy. “She says I’m her best friend and she wants to have babies and live down the road from me when she’s older. And if Carmela wants to talk about having babies and getting married then that’s what we’ll do. You hear about children all over the world dying suddenly, so I think we’re lucky really. I believe in just taking each day as it comes and if that moment comes, it’s just how it’s going to be.”
Laura Maidment, Julia’s House Public Fundraising Manager, will be joining Carmela part of the way on her walk. Laura said, “You couldn’t get a bigger superhero than Carmela. She’s amazing and I’m looking forward to joining her on her Jurassic Journey. Everyone at Julia’s House is 100 per cent behind her and super grateful for her – and Lucy’s - amazing support. Go Carmela!”