We came away from Pride of Britain “Fundraiser of the Year” Paula Maguire feeling drenched in positivity and I didn’t think we’d find anybody as positive again during the rest of the 26 Miles 4 MND project, but there must be something in the Wakefield water as 15 minutes later we met Ian Pratt.
He’s heavily disabled by motor neurone disease – now having to use a neurological electric wheelchair and he’s lost a lot of his speech. Despite that, he does a good job of coming across as a happy person.
Appropriately enough, as I write this, Australia has recently thrashed England in the Rugby World Cup. Ian was born “down under” and he has that down to earth “make the most of life” Aussie spirit that was in abundance on the rugby field. When we visited, his mum was over here on holiday and the sun shone on us and the Maguires as we set up our kit in his beautiful garden. It was all so pleasant and Ian’s such a nice guy that I had to keep reminding myself of just how ill he is.
Because we’ve been meeting so many positive people, Cristian and I were beginning to worry that 26 Miles 4 MND wouldn’t get across the seriousness of motor neurone disease properly. People with MND tend to show an awful lot of character – which is “awfully” ironic because it might lead to people thinking “oh it’s not so bad after all”. That would be terrible. Here are three sobering facts – 5 people a day die of MND in the UK and in 2012, 1 out of every 232 people who died in England had MND. Many people with MND are trapped within a body that won’t move and are totally reliant on the help of others.
More than one person has remarked to me that motor neurone disease is more cruel than cancer because, unlike most cancers, a diagnosis of motor neurone disease comes with absolutely no hope and still no effective treatment.
Ian was diagnosed with motor neurone disease at the age of just 42 after undergoing tests on his daughter’s second birthday. For a reality check, compare a picture of him on his wedding day 5 years ago with how he is today.
“I’m sure it’s the only diagnosis that comes with an apology – I’m sorry to tell you, you’ve got motor neurone disease and there’s bugger all I can do to help you.”
On the day we visited, he had spent the morning chasing up repairs to his brand new electric wheelchair and was stuck in an old manual one, unable to do anything for himself. Remarkably he was still smiling despite the fact that, as he told me with his soft Australian accent, he was having a “shit day”.
Whilst we were setting up, the repaired wheelchair arrived. I asked Ian if I could photograph him being moved into it to show just what motor neurone disease does to a person. Within three years he’s basically become a rag doll. He has to be fed and as he said himself, ” I can’t even wipe my own bum”.
“I’ve always been a half full kind of guy. I know I’m probably going to die from it so I do everything I can to enjoy the time I have with my daughter and my wife.”
When we visited Ian, his daughter had just lost her first tooth. He’s never going to give up his fight and is hopeful that treatments and a possible cure might be found during his lifetime. As he said –
“I can’t give up because it would piss me off to think that if I give up today, tomorrow they may find a cure.”
Cristian’s 26 Miles 4 MND portrait of Ian will be published as one of the 26 portraits during 26 days leading up to Cristian’s marathon fundraising run. If you’d like to donate to help find a cure for Ian and other’s like him, click here for our Just Giving page.
(click on any image below to enter a gallery of shots taken during Ian’s photo shoot)