Seven-year-old Carmela, who has a rare and life-limiting muscle weakening condition, is taking part in the Captain Tom 100 challenge to raise awareness for Julia’s House and give back to her nurses and carers.
Inspired by Captain Tom’s determination to ‘get out and do something’ for others, Carmela Chillery-Watson from Wiltshire has written a 100-word poem about her nurses and carers, and activities at Julia’s House in the hope of raising awareness and donations.
She plans to read the poem live on her ‘Carmela’s Stand Up to Muscular Dystrophy’ Facebook page at 3pm on Friday 30 April – the same day that Captain Tom would have celebrated his 101st birthday.
Mum Lucy said, “Carmela thought Captain Tom Moore was brilliant – he was a real legend and he did inspire so many children to just get out and do something, no matter what their ability.
“Carmela wanted to use this challenge as an opportunity to give back to the Julia’s House nurses and carers who have been a lifeline for us. She’s only seven, so I did help her with the poem and making sure it was only 100 words – that part was quite tricky! It’s very personal and we’ve kept it as a surprise for everyone.”
Julia’s House cares for children with life-limiting and life-threatening conditions in the heart of the Wiltshire community. The charity’s hospice building in Devizes has just reopened following the latest lockdown rules, however the Julia’s House nurses and carers have continued to provide vital support to families throughout the pandemic in the family home and through virtual sessions.
“Carmela’s visits from Julia’s House give her something to look forward to, someone to have fun and giggle with, and someone that just takes her as who she is. It also helps to occupy her mind on something other than her condition,” said Lucy.
“Her Dad works away during the week, so it’s just us a lot of the time. While she’s being cared for, it gives me the chance to do simple things like go shopping, or go for a walk to clear my head. Even though it’s free time for me when Julia’s House visits, I do sometimes stay for the session – I enjoy watching Carmela with her carers because she’s so relaxed and happy with them, and it’s lovely to see.”
The youngster from Market Lavington was diagnosed with a rare form of Muscular Dystrophy when she was three years old. The life-limiting condition causes her muscles to weaken and waste over time, and there’s currently no cure.
Lucy said, “Carmela’s starting to realise, ‘I’m different and I want to be the same as my friends’. She has more sad days about her condition as she’s getting older, but she’s slowly coming to terms with it. During lockdown her hips and legs have got tighter, and she’s completely lost her shoulder girdle movement which means she can only raise her arms up to shoulder height. Unfortunately with Muscular Dystrophy, once you’ve lost that mobility it doesn’t come back."
“For a seven-year-old switched on kid, it can be really frustrating for her,” said Lucy. “I try to be really strong with her and help her cope with what she has, but she does have her sad days and can feel fed up.”
Nicky Clack, Julia’s House fundraising administrator, said: “Carmela is a little superhero – she’s always thinking about how to help other children and give back to the people that care for her. We’re so touched that she’s written a poem for us and want to say the biggest thank you to Carmela for raising awareness and funds for Julia’s House.
“We don’t receive any ongoing government support to keep our service going in Wiltshire. So it’s only thanks to our generous supporters that we’ve been able to care for children like Carmela in the family home throughout all three national lockdowns, and give parents the essential breaks and practical support they need.”
Carmela's 100 word poem, 'Happy Place'
12 months of Covid was tough on my body and mind
Made it hard to act like a kid, being sad without Daddy around
Having my carers visit weekly lifted my mood and spirits
We laughed and sung very loudly, which made me feel like there were no limits
My carers would let me be boss and help me smile with glee
We’d pretend to swim or try and floss, then play mermaids with Carer Fi
Julia’s House is our lifeline, we’d struggle to mentally survive
They make me smile and shine and help me and my family to thrive
Carmela has more than 10,000 followers on her Facebook page, including adults and children from across the world who also live with life-limiting conditions: www.facebook.com/carmelasstanduptomusculardystrophy/
Make a donation to Julia’s House children’s hospice and support Carmela’s Captain Tom 100 challenge at www.captaintom100.com