Super Josh

Find out more about Josh and the Joshua Wilson Brain Tumour Charity which has the dual aims of providing support to children with brain tumours and post surgery disabilities, as well as making the world ‘changing friendly.’

Dawn Fidler, Josh’s mum, tells us all about her incredible son Josh, and why they are working with Mencap and the Changing Places campaign…

One of the most amazing things about my son is his smile. Despite being in intensive care at Christmas, and still so poorly, he continues to smile. I feel I owe it to his sheer strength of will to keep believing in him and keep fighting to make the world a better place for him and other families like ours.

I launched the Joshua Wilson Brain Tumour Charity in August 2013, with the dual aims of providing support to children with brain tumours and post surgery disabilities, as well as making the world ‘changing friendly.’

Joshua’s brain tumour was discovered when he was three and a half years old. It was the essential, life-saving surgery that left him with disabilities meaning he cannot sit up, talk or eat unaided.

Changing friendly
We’ve always talked about the ‘changing’ issue. We are naturally a very independent family - when Josh is well he’s always busy with activities at his special needs school, getting involved with the charity or going to gigs and listening to his favourite music. As he’s got older and bigger – he’s 13 now – I find I cannot lift him onto the baby-sized changing benches, so either have to find someone to come with us, or change Josh on a dirty toilet floor. On a few occasions I have found I haven’t the strength to lift him back up, so have had to call on a member of the public to help. This is embarrassing for Josh. Like any young boy, he values his privacy and his dignity.

We only came across the Changing Places campaign after we had launched our charity, and decided to get in touch because we share such similar aims, and together we will be stronger. Our dream would be for a changing places toilet in every area, and that decision-makers and businesses will work with groups and campaigners like ours to raise money, and to raise awareness.

Struggling to get the support we need
Josh spends half the week with me, and half with his dad Colin who lives nearby. As parents, we get on incredibly well and sharing the care in this way allows us both the breaks we need as well as spending valuable time with our son.

The fact that Josh has two homes has complicated his eligibility for some services and we have had to do a huge amount of fundraising to get the equipment we need in both homes. Added to this, shockingly, we are only entitled to three nappies a day and have to buy extras privately at a cost of about £100 a month. We also get only 10 syringes a month. Bearing in mind Josh takes over 10 medicines a day, and the time and energy to sterilise needles in-between, this seems pretty unfair to us.

We don’t ask for much. We take on most things ourselves, and we are happy to. Josh’s dad and I have been lucky enough to keep working when we are not caring for Josh, and we wouldn’t want to take any money from someone who needed it more.

It’s only really hard work when Josh is ill. Over Christmas Colin and I did the 12 O-clock rota - 24 hours on, and 24 hours off. This continued when we made the awful decision to take Josh off his ventilator and move him to a hospice. It was a complicated decision, but if we had put him on an automatic ventilator he would have slipped into a coma. Somehow Josh defied all odds and came through, and came home with us.

I think this period has been once of the hardest ever – even more so than when he had his surgery as a child. Back then we were just numb, and we didn’t really understand what was going on, but now we do, and that makes it worse.

Amazing support
Since we began fundraising for Josh, and more recently since we launched his charity, we have been overwhelmed by the support we have received.

Both Colin and I have massive families – the family mafia we call them! It’s not just them, but people who we have met in Josh’s world, who have become like family, and whose support we couldn’t live without.

Newsreader Kay Burley, musician Richard Fairbrass and professional rugby player Adrian Morely have signed up as patrons of Josh’s charity, and we are looking forward to working with them and raising awareness of our work.

Sacha Lord-Marchionne, the man behind The Warehouse Project, Parklife and the Hideout Festival, has been the most incredible supporter and helped raise over £26.5k. He too has agreed to be a patron.

Attitude is key
There is certainly a long way to go before we will see all the changes we dream of, but in the meantime I think the right attitude is so important.

Our local Sainsbury’s in Bury has agreed to talk to us about changing places which is a great start and I think our job is to work together to find the means and find the money.

We were asked to rate a changing places toilet at Event City in Manchester, and when I mentioned it would be good to have somewhere for the carer to sit – Josh often needs to lie flat for a while because, as well as being changed, he also needs to stretch out his spine which can become painful, When I explained this they put one in straight away.

Our job is not to point fingers, but to work together and provide solutions. Most people who meet Josh, and understand what life is like for him, quickly come around to his way of thinking.

The official sponsor of the Changing Places campaign is Aveso Ltd. Aveso hope that its support for the campaign will help it achieve its target of 1000 registered Changing Places toilets within the next three years.