Cornish schoolboy with rare degenerative condition raises money for charity
Stanley is walking 10 miles across five days for Children In Need
A schoolboy from Cornwall who has a rare degenerative condition is walking 10 miles across five days to raise money for charity.
Eight-year-old Stanley Barnes, from Mawnan Smith near Falmouth, has San Filippo Syndrome.
It means he is constantly losing skills, such as his speech, and the condition can be likened to childhood Alzheimer's.
He is incontinent, struggles to sleep and will eventually lose the ability to walk but still manages to go to mainstream school.
His mum Mari has told us how things have become very difficult over the past year.
She said: "Up until age three he was progressing pretty normally but since then we have been watching his skills disappear.
"We've watched all of his words disappear, he sometimes doesn't recognise me as much anymore, when I go and pick him up from school sometimes he looks through me now, or beyond me, as a mother that's really quite hard.
"The medical professionals have started saying to us that they're going to be pulling out the speech and language therapy because there's nothing more they can do to help Stanley, it's hard to hear that as a parent, and that he's functioning like an eight month old baby now."
But despite his struggles Stanley still wanted to do something for others through Children In Need with his school.
As part of his day-to-day activities Stanley goes walking with his teaching assistants to help burn off his extra energy, as he is still very physically able.
He has been marching the Cornish coast path, which started in lockdown, and thought he could get some sponsorship in going a bit further.
So he decided to walk 10 miles across five days in a fundraising campaign called 'Stanley's Steps'.
Stanley has already smashed his fundraising target, reaching over £3,000 in just a few days.
He is on target to finish his challenge tomorrow (Friday 19th November).
Mum Mari added: "I'm so incredibly proud that Stanley's making such a huge difference like this, he's always had such a positive effect on people, everyone loves Stanley, he's always so happy and you can't help but adore him. Anyone who meets him falls in love with him.
"For someone who is losing so many skills it is lovely to see that his personality is still there and is doing wonderful things.
"The fact that he's still doing amazing things like this is fantastic."
You can find the Just Giving page for Stanley's Steps here.
Stanley's fundraising page reads: "The AMAZING Stanley Barnes is raising money for Children in Need by completing a walk every day during school hours for one week - Team Stan are aiming for 10 miles over 5 days.
"Stanley has a rare and degenerative condition called San Filippo Syndrome and events are regularly held to raise money for charities associated with this disease including the MPS Society.
"Stan has a huge smile for everyone he meets and we know he'll love to raise money for other children in need both in the UK and in other countries. THANK YOU."