A brave Bury mum has set up a charity after her son was left partially blind and disabled following intrusive surgery to remove a brain tumour.
Dawn Fidler left her job as in sales and marketing last year to set up the Joshua Wilson Brain Tumour Charity, affectionately known as the SuperJosh Charity, to help other parents in her situation.
The charity operates mainly through social media, boasting nearly 40,000 Twitter followers, and has already made a real impact on people around the world who offer support and fundraising donations.
Dawn told MM: “I think the charity connects with people because it’s a boy, a real boy, not just charity. Josh is there and he’s talking about what he’s doing at school and what he’s been up to.
“There are people who log on at morning and tea time to see what he’s been doing, and they could tell you what classes he’s got tomorrow, because they’ve remembered. It’s like a real life family on Twitter.”
SUPER JOSH! Josh Wilson with his beloved superheroes
Ten years ago, Josh Wilson was a normal three-year-old, but after doctors found a life threatening brain tumour he was rushed into surgery.
After the operation Josh was in a coma for six weeks, and due to the location of the brain stem, when he came round he was partially blind and disabled, battling epilepsy, scoliosis and joint problems.
Now 13, Josh’s tumour is classed as frozen at present, but sadly Josh’s spine is severely deformed, which is affecting his lungs meaning a chest infection could kill him.
Because his spine condition is so severe he can’t have certain medicine and is unable to have surgery, which Dawn confesses makes her feel helpless at times.
She said: “The fact that I can’t help my son, I can’t fix him, is something I can’t even put into words. It’s heart breaking, but its him who inspires me and the charity allows me to help other children.
“We do know we’re on borrowed time now, but Josh is so empowered by his charity and it’s what keeps him going too.”
— #SuperJoshCharity (@SuperJCharity) May 19, 2014
Despite his disabilities, Josh’s mind is still fully functioning and he is still just ‘a typical cheeky 13-year-old’ who loves football, rugby, music, animals and is obsessed with anything Marvel or DC.
Josh’s time is split between his mum and his dad Colin, and after his surgery they found themselves in a difficult position as government funding only covered the cost of one home modification.
This led them on a fundraising journey in a bid to raise enough money to afford the modification for both houses.
Over the last 10 years, £60,000 has been raised by the public which has helped pay for cars, wheelchairs and home modifications that improve his quality of life.
More than £25,000 of that money was raised off the back of a Gangnam-style video featuring of officers from the Prestwich and Whitefield Neighbourhood Policing Team, Chief Constable Peter Fahy and the cast of Scott & Bailey.
The video received 55,000 views and helped them raise funds that could have potentially taken years.
Dawn said: “I’m so grateful for all the support I’ve received since Joshua was first diagnosed, I was inspired, and what was why I set up the charity.
“I saw how much support we had received from the beginning and I wanted to do that for others, I think they like the fact that they’re speaking to a family rather than a professional.
“I‘m not surprised by the number of families in my situation because I’ve been in that world for 10 years. I know how many children do actually live with a brain tumour and how devastating it can be. But that’s the driver.”
Since launching in August last year the Joshua Wilson Brain Tumour Charity has gone from strength to strength.
In the first year they hoped to raise £50,000, but had already raised £53,000 by January, the goal now is to try and raise £100,000 in time for the charity’s first birthday.
— #SuperJosh (@JourneyJoshuas) May 21, 2014
The SuperJosh Charity does not have a list on the website of what they help with as families can just get in touch if they need support in anyway.
Dawn said: “If a family needed help but looked at the website and thought they weren’t in a certain criteria so didn’t get in touch with us I’d be gutted.”
If any child goes into hospital with a brain tumour the foundation will give the family a grant of £200 to help them manage with the costs of overnight stays and hospital visits, they can also assist in any other financial difficulties that parents may potentially come up against.
The charity does not just work with families though, they also help people and places that have been in contact with them along Joshua’s journey.
Dawn said: “In Manchester Children’s Hospital and Bolton Hospital, because we’ve been in those hospitals, and we’ve seen that the telly was broken, the kids have no DVDs and the Xbox and games had been stolen.
“So we’ve been putting these packages in place, and when we were back at the hospital with Josh in March we saw children playing with the things we donated, how magic is that?”
— #SuperJosh (@JourneyJoshuas) April 10, 2014
She added: “Going in and out of hospital for 10 years we know that kids need entertainment or they’ll go insane.”
The charity is currently working with hospitals in Oldham and Wythenshawe to provide something similar, and hope to ensure that all hospitals in the Manchester area have got what they need to keep children who spend a lot of time in hospital happy.
The symbol for the charity is a thumbs up and those who help the charity are known as thumbraisers.
“Josh signs to communicate, and a thumbs up means yes so we incorporated that into the logo as it’s a really positive thing and has the same meaning wherever you go” Dawn said.
It’s fortunate that the symbol is international, because Josh has fans and followers in all four corners of the world with people as far flung as Australia showing support.
— Caroline Moore (@CazM88) May 15, 2014
“When Josh was in intensive care we had visitor from Man City and Manchester United and we didn’t realize that Manchester City had fans in Malaysia,” Dawn explained.
“After a Manchester City player tweeted about his visit to Josh, this whole class of kids in Malaysia had gone out, got blue jumpers, got Josh’s SuperJosh badge printed on them and they sent us a picture.
“The whole thing was just incredible. I’m surprised by the reach we have every day!”
Dawn, Josh and all of his thumbraisers are set to be incredibly busy over the summer, as they are one of Parklife Festivals sponsored charities.
Parklife and Warehouse Project founder Sasha Lord is a patron and over the twelve weeks of the Warehouse Project, £24, 000 was raised.
The Josh Wilson charity will have a stall at Parklife and street artists from Manchester and Yorkshire will be painting canvasses for them over the weekend.
There will also be a Climb for Josh on Tryfan beach in Wales on June 14/15 which anyone can take part in, and Josh also has a float in the Prestwich Carnival.
— #SuperJosh (@JourneyJoshuas) April 1, 2014
People can tweet the charity on @JourneyJoshuas and ‘thumbraise’ in any way they’d like – an ex solidier will be running three marathons in three days over the summer.
SuperJosh caps, pins and hoodies can also be purchased from the website and infamous hard-man Vinnie Jones has shown his softer side by tweeting a picture of himself with the pin.
Although Josh’s life is limited the charity is something that will live on.
Dawn said: “We wanted to call the charity Super Josh but in the end we went with his full name as it will be his legacy.”
Although the charity will be Josh’s legacy, Dawn’s mind is very much focused on the present.
She told MM: “I’ve a got a boy who’s 13 nearly 14, and he spends so much time buzzing around getting so much love and support, and he’s still here!
“I’ve seen so many children die over the years and people say how do you keep going? And I say Josh, simple!”