“Carmela is sleeping next to me. She’s always so tired now,” says Mum, Lucy.
Despite having a rare form of muscular dystrophy, which affects just one child in a million, eight-year-old Carmela Chillery-Watson has achieved more than most youngsters (or adults) could dream of. She’s raised thousands of pounds for charity, met several high profile celebrities, including HRH Prince William, and received awards for her bravery and fundraising efforts.
“Carmela’s really bright and loves new adventures, so it’s incredibly frustrating for her and we do have a lot of ups and downs,” says Lucy.
“She doesn’t like to go in her wheelchair – this isn’t something she’s ready to accept yet – but she gets too tired to walk very far, so she doesn’t like to leave the house anymore. She used to love to ride on her bike, but she can’t do that now because it’s too hard for her to use her handlebars to turn a corner.”
Something that Carmela is still able to do – and loves most of all – is horse riding. When she first started horse riding she was too floppy to sit straight, so her Julia’s House carers would walk alongside her and keep her steady. Now she’s able to sit up by herself, thanks to lots of tummy and core exercises with Mum, and she recently passed her Grade 2.
Julia’s House has been a constant support for Carmela and her family since the youngster was diagnosed with muscular dystrophy at three years old.
“Julia’s House is like our second family,” says 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 and I’ve been home-schooling Carmela since before the pandemic. 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 a two or three hours.
“It’s lovely to have a chat with the carers when they come to our home each week, and they treat Carmela like she’s their own daughter,” says Lucy. “She absolutely loves them too – they make her laugh and they have so much fun playing role play or whatever she feels like that day. They’re so caring and real, and having that regular support from someone you can rely on is life-changing.
“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.”