Living with Wilson’s disease

You expect him to burst out of that wheelchair and start shooting hoops.

Because 28-year-old Hayden Roper looks tall, 6ft 1inch or 6ft 2inch perhaps? – He thrusts three awkward fingers at me. Hayden's 6'3''– he could almost slam-dunk from the confines of that chair.

Hotpool therapy – Hayden Roper and his battle with Wilson's disease. Photo: Bruce Barnard.

But it's not the reality. Because a rogue gene and a chemical element conspired against him.

Hayden's head is great – he's smart, sharp and funny. But the body is knackered. 'I feel trapped in it.” Except for a vice-like handshake – and you can learn a lot about a man from his handshake.

So while this is a seriously disabled man – he's a good one.

Hayden has Wilson's disease. 'It has cost me my career, my independence and most of my friends.”

That's a devastating stroke of misfortune for a young man with a career, a passion for football and bodyboarding and an Outward Bound leadership course in the wind.

I litmus-tested the Sun Media newsroom – what's this disease that's robbed a good man of a chance at life? Everyone is oblivious.

And that's exactly the motivation Hayden needed. He drove his cart into the Sun Media office to educate us about Wilson's disease. Knowledge is understanding.

'And if you understand my problem then you just might stop me in the street for a chat.” He craves socialising but Wilson's doesn't make it easy.

And education might also mean that for someone else, the disease might be recognised early enough for treatment to make a difference. 'I just don't want anyone to go through what I'm going through.”

In Hayden's case it was a double whammy – struck by a rare genetic disorder, hepatolenticular degeneration syndrome affecting one in 30,000 people, which wasn't picked early enough.

The chemical element copper can be a friend assisting development of healthy nerves, bones, and collagen, the main protein in our connective tissue.

But copper can also be a deadly enemy. Copper accumulates in people with Wilson's disease – often with a fatal outcome.

In Hayden's case the stored copper lodged in his brain. And during three years a perfectly healthy, well-adjusted young man was living life between a bed and a chair and couldn't walk, talk or eat.

But his humour remained intact. When his brother commented copper was quite valuable, Hayden said: 'Well I've got heaps”.

This is not as easy as it seems because Hayden articulates through an alphabet board – he scans the board to spell out words letter by letter. It's laborious and frustrating.

And his vanity remains intact. The Sun took a photo of Hayden in the hotpools – head thrown back, mouth agape, shrouded in steam and supported by two caregivers. It told the story.

His mother Louise Roper held the photo, smiled plaintively and remarked that: 'Yes, it was the reality”.

But Hayden didn't like the reality, didn't like the photo. The body is weak but the mind is strong.

'Is it because we can't see your six pack Hayden?” asks brother Eddie. That eases the tension.

So we chose another photo which also tells Hayden's story.

But what is Hayden's reality, the reality his Mum talked about?

Well, he's patronised. For example, this reporter is talking slowly, loudly and enunciating as though Hayden is either deaf, foreign, stupid or all of the above.

He is none of those. So I correct my style.

While we're talking, communicating perhaps, a caregiver is feeding Hayden. Breakfast, lunch and dinner is gravity-ingested through a PEG tube directly into his stomach. Food becomes just fuel.

And this is a man who loved his spag bolognese without the bol, adored his macaroni cheese and hankered for KFC, Wendy's and pizza. Now he can't swallow – he's lost one of life's great delights.

This is also a man who tremors often and uncontrollably – it's quite disconcerting to the uninitiated. But then his mother places a calming hand on his knee and whispers 'stop it”. Somehow, somewhere Hayden finds the switch and the tremors stop, at least until sometime soon.

He's wide-eyed like a man possessed or petrified. His mouth is agape and his head twists back at an ungainly angle. They're all symptoms, they all go with the territory. So what's the prognosis?

'We have been told what we have now is possibly all we are going to get,” says Louise matter-of-factly.

Hayden hears this, obviously not for the first time, and moments later is talking about walking again and returning to work. Is he in denial or is he simply a man with a dream?

It's not completely fanciful because at his worst Hayden couldn't roll over in bed by himself. Now he's manoeuvring his electric wheelchair around a tight living room, around the neighbourhood and around town.

And if Hayden's fantasy ever materialised he could have his old job and his old boss back.

A reference reads in part: 'It is with great sadness to see Hayden in his current state of health as he is a different person to the one we all know. We can only hope that he will improve and return to our staff one day”.

It's signed Sir Gordon Tietjens. Yep, the sevens knight has got his back. That's impressive.

And while they wait for the extraordinary, the Ropers will to strive towards any little improvement. Therapy today, gym tomorrow, hot pools next week – they're not ready to concede to conventional medical wisdom yet.

But the rogue gene is conspiring against them – a rogue gene carried unwittingly by both Hayden's mother and father.

And had they known Hayden had Wilson's disease, he could have been treated with zinc to keep the Wilsons in check, to minimise the damage. But they didn't know and as a result Hayden and his brother stood a one-in-four chance of getting Wilson's.

Fate randomly chose Hayden.

Hayden is a man of faith, a good Christian. It's a faith which has remained unshakeable throughout this ordeal. Although he might be forgiven for wondering why his Maker chose this life, this ordeal, for him.



Posted on 26-06-2015 11:15 | By overit

This poor man-it really puts ones own life in perspective.

Good onya Hayden

Posted on 26-06-2015 16:27 | By GreertonBoy

Keep battling this thing, with your strength, who knows, you will probably beat it! Overit, I don't think Hayden would appreciate being referred to as 'poor guy', he is merely a good bloke with a couple of issues if you ask him, I bet :) I wish him all the best, keep it up bro....

Amazing story

Posted on 26-06-2015 21:29 | By Francesca

I have nothing but admiration for Hayden and Hunter Wells has written an accurate heartfelt piece of journalism. A very difficult thing to do. A word board is the most frustrating way to communicate so I really admire you Hayden. Kind wishes

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