Josh and Dawn's story
Dawn Fidler, Josh’s mum, tells us all about her incredible son Josh, and why she is working with Mencap and the Changing Places campaign…
We launched The Joshua Wilson Brain Tumour Charity in August 2013, celebrating Josh's 13th Birthday, with the dual aims of providing financial help and advice & 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 neuromuscular disabilities resulting in him needing one to one care & support for all aspects of his life.
We’ve always talked about the ‘changing’ issue. We are naturally a very independent family - when Josh was well he was always busy with activities at his special needs school, getting involved with the charity or going to watch football & gigs and listening to his favourite music. As he got older and bigger Josh didn't fit onto the baby-sized changing benches, so we had to wedge his buggy underneath so it didn't snap & struggle, it was either that or change Josh on a dirty toilet floor. On a few occasions I found I didn't have the strength to lift him back up, so ha had to call on a member of the public to help. This was embarrassing for Josh. Like any young boy, he valued his privacy and his dignity.
We only came across the Changing Places campaign as we were launching 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 needed
Josh spent half the week with me, and half with his dad Colin who lives nearby. As parents, we got on incredibly well and sharing the care in this way allowed us both the breaks we need as well as spending valuable time with our son.
The fact that Josh had two homes complicated his eligibility for some services and we had to do a huge amount of fundraising to get the equipment we need in both homes. Added to this, shockingly, we were only entitled to three nappies a day and had to buy extras privately at a cost of about £100 a month. We also got only 10 syringes a month. Bearing in mind Josh took over 10 medicines a day, and the time and energy to sterilise needles in-between, this seemed pretty unfair to us.
We loved caring for Josh and it only became really hard work when he was poorly. When Josh was in hospital Colin and I did 24 hours on and 24 hours off which helped keep us emotionally & physically strong for Josh. The hardest part of Josh's illness was when we made the awful decision to take Josh off his ventilator and move him to a hospice. It was a complicated decision, but his left lung had fully collapsed and if we had put him on an ventilator he would have slipped into a coma. Living up to his nickname #SuperJosh, somehow Josh defied all odds and came through and came home with us.
I think this period was one of the hardest ever – even more so than when he had his surgery as a child.
Since we began fundraising for Josh, and since we launched his charity, we have been overwhelmed by the support that we have received from friends, family, public & businesses.
Both Colin and I have big families – people call mine the family mafia!
It’s not just them, but people who we met in Josh’s world, who have become like family and whose support we couldn’t live without.
In particular our Charity Trustee Team & our awesome team of #Thumbraisers
Our Patron Sacha Lord-Marchionne, the man behind The Warehouse Project, Parklife and the Hideout Festival has been the most incredible supporter and has raised over £26.5k for Josh's Charity - an unreal boost to help our work!
We are lucky to also have Newsreader Kay Burley, musician Richard Fairbrass and professional rugby player Adrian Morely as Patrons of Josh's Charity and we are looking forward to working with them and raising awareness of our work.
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 Heaton Park 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 and I explained why, they put one in straight away. Josh often needed to lie flat for a while because, as well as being changed, he also needed to stretch out his spine which can become painful so having somewhere to sit with him is a real benefit.
Our job is not to point fingers, but to work together, raise awareness and provide solutions. Most people who met Josh, and understood what life was like for him, quickly came 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.