A brave 10-year-old with Muscular Dystrophy is making a hundred mile journey across Purbeck to raise £10,000 for the Julia’s House children’s hospice.
Carmela Chillery-Watson along with her mother Lucy, aims to cover 100 miles over two weeks in her wheelchair and using walking aids, taking in some of the most beautiful – and wheelchair accessible – sights in Purbeck.
Lucy and Carmela Chillery-Watson on part of their 100-mile charity walk outside Durlston Castle, which won a top award for accessibility
Part of the Superhero Series
Their final stretch of the journey, on Saturday 29th June, 2024, will be from their home in Wareham to Julia’s House hospice in Corfe Mullen to meet some of the care staff there.
An amazing adventure has already seen Carmela and Lucy tackle Corfe Castle, RSPB Arne, Swanage, Blue Pool and Durlston, accompanied by their dog Tinker.
The challenge is part of the UK-wide Superhero Series, a programme of mass participation events for people with disabilities – otherwise known as everyday superheroes – sponsored by Marvel and founded by paralympian Sophia Warner.
Carmela, who has dressed as her favourite Marvel superhero Spidergirl for part of the journey, is no stranger to fundraising having already helped to pull in £400,000 for Muscular Dystrophy since being diagnosed with the life limiting condition at the age of three.
Carmela has worn her Spidergirl costume during the journey, because not all heroes wear capes
“Very tiring, but very fun”
Carmela said:
“I’ve only just moved to Dorset, and I hadn’t been to the Jurassic Coast before, so we thought it would be a good idea to raise money for Julia’s House at the same time as exploring this lovely place.
“It’s been very tiring but it has been very fun at the same time and I’ve got to see all these stunning views I wouldn’t normally see like Old Harry rocks and Studland Beach.
“Some days are hard and I can’t do anything, but some days are super easy and I’m bright-eyed and bushy-tailed. It does get a bit heavy but most of the time, I just carry on with it.”
LMNA congenital muscular dystrophy, a rare form of the condition which Carmela has, affects just one in a million children. It is a progressive muscle wasting condition which affects her movement, heart and lungs, and there is currently no cure.
Since her diagnosis in 2017, Carmela and her family have raised more than £400,000 for Muscular Dystrophy UK, and now they are hoping to be able to help Julia’s House as well.
Mum and daughter chose wheelchair friendly routes while still seeing the best of Purbeck
“I would feel lost without Julia’s House”
Lucy Chillery-Watson said:
“Next year, about eight percent of Julia’s House funding is going to be stopped, which means that some of their sessions will have to decrease significantly. The shortfall will affect life limited children who will have nowhere to go.
“I get respite care so I can get a few hours off a week to do my own thing. I don’t get help from anywhere apart from Julia’s House, and I would feel very lost without them.
“We have raised over £400,000 for Muscular Dystrophy since Carmela was diagnosed, so we thought it was time to do something for Julia’s House.
“Amazingly, Julia’s House has to raise more than 90 percent of the money it needs each year to run this vital service, and makes a life-changing difference by providing frequent, flexible care for children with life-limited or life-threatening conditions to give their parents a much-needed break.
“There are so many children under their care who don’t have a voice or who are unable to advocate, but Carmela can, so she is the best person to do it.”
Carmela has been walking some of the route wherever possible, despite her muscles being weakened by MD
Trying to cover 100 miles in two weeks
Lucy added:
“We are trying to cover 100 miles in two weeks – that is like four marathons for Carmela, who needs to take rests along the way and can manage about four hours a day, so it really is a superhero effort from her!
“We are trying to raise about £10,000 which is a big ask, we have set up a Just Giving page and we would really love to find a sponsor.
“What child gets up and does this all day? Carmela faces so many challenges in her life, but has never let any of them hold her back – I am so proud of her!”
Carmela during her Wonder Woman 300 kilometre walk in 2020 to raise funds for Muscular Dystrophy research
Positive impact on the community
Carmela has previously completed an epic walk of 300 kilometres in 30 different locations across Wiltshire, Surrey, Devon and Cornwall, dressed as Wonder Woman and raised £17,500 for Muscular Dystrophy research.
During lockdown, she had to shield due to her condition, meaning she missed essential hospital and physio appointments, but instead posted videos of her daily exercises online, in an attempt to help others living with physical disabilities.
In October 2023, she was presented with a British Citizen Youth Award Medal of Honour, in recognition of her positive impact on her community and wider society.
Seeing Old Harry for the first time was a highlight of Carmela’s Purbeck adventure
Potential gene therapy treatment
On their latest adventure, Carmela, Lucy and Tinker have already been joined by Martin Edwards, chief executive of Julia’s House, on the leg at RSPB Arne, and have had to reroute their journey to Studland after an unexploded bomb was found at Knoll Beach.
Although there is currently no cure for the disease, scientists are researching better ways to treat it and to prolong life expectancy, as many children with MD do not survive into adulthood.
However, a family in the USA who also have a child with LMNA congenital muscular dystrophy have raised more than $2 million to fund trial tests which could lead to a potential gene therapy treatment.
Tinker the dog has been a constant companion for Carmela on the 100-mile walk
“We have to crack on and raise money”
Lucy said:
“If they can get a gene therapy for their child within the next few years and if it works for him, then it’s positive for all the other Muscular Dystrophy charities.
“Muscular dystrophy is a horrible thing, but it is what it is and we have to crack on and raise money to give ourselves hope of a cure.
“The good thing is that all the exercise we get is helping to keep Carmela mobile for longer, there are quite a few children of her age with her form of MD who are now in a wheelchair full time.”
At the start of another day’s walk, this time from Durlston Country Park
The final section of the journey, on Saturday 29th June 2024, will go from Wareham to Julia’s House hospice in Corfe Mullen
Further information
- Donate to the appeal on Carmela’s Just Giving page
- Find out more about Muscular Dystrophy on the charity’s website
- See the work done by Julia’s House hospice
