This is one of the most powerful stories I have ever had the privilege of telling. Emotional, tragic and positive all at once.
The catalyst was a very personal and harrowing interview by Seven’s sports commentator Hamish McLaughlin with his long time friend Ange Cunningham. A fun, 43 year-old mum of two, former pro tennis player now suffering from Motor Neurone Disease.
It took five months because Ange can’t talk. She can now only communicate with an electronic device. It looks like an iPad with a grid of the alphabet. Ange uses the only part of her body she can still move – her eyes – to stare at the letter she wants for a few seconds until it registers, before moving to the next, very slowly forming words then sentences.
MND is horrific. It shuts the body down but not the mind.
I knew what to expect and I thought I was prepared. I had read Ange’s responses to Hamish talking about both living and dying.
But meeting her, spending one sunny afternoon in her kitchen, laughing at the electronic accent she had selected on her voice machine, flipping through family photos and seeing her daughters come bounding in after school ripped at my heart in a way so few stories have.
As two little girls happily babbled about their day, raided the fridge and played the piano, their mum lay locked in a body that no longer looked like hers. She could only watch them flitting around the room, soaking in their liveliness.
I am also a mum of two and watching this broke my heart. This horrific disease with no known cause or cure had ravaged this young woman’s body, leaving her unable to move, speak or swallow and will soon take her from her family.
She has written her girls a book – a story of her life with photos and anecdotes, lessons and tips for growing up, meeting boys and surviving Mother’s Day without her.
When filming wrapped that evening, I got into a cab and sobbed. That night in my hotel room I couldn’t stop crying at the injustice of MND.
But in the middle of the tears and cruelty of this disease I was also shown positivity, the like of which I have probably never seen before.
A home filled with love and almost a sense of normality despite what Ange is going through. Her husband Pat says they don’t focus on the past or even the future, instead they simply live every day they have.
Ange herself said to me she has so many other things to be thankful for.
Meeting Ange led me to Cath Baker. Cath is a nurse and has known Ange since they were kids growing up in Tasmania. Cath had Thursdays and Fridays on the roster caring for Ange but their relationship is more than patient/carer. Cath says Ange is one of her best friends.
And then three months ago in the cruellest twist imaginable, Cath was diagnosed with MND.
Cath is gorgeous. She’s a 46 year-old mum of three girls, with a shaggy dog called Harry, a bustling home and a loving husband. But already she is losing strength in her arms, struggles to hold a pen and do up buttons.
Ange and Pat were devastated when their friend was diagnosed – primarily because they know what lies ahead for Cath, and because Cath herself has witnessed up close what lies ahead.
But Cath and her husband Grant don’t look at it like that. They are grateful they know what to expect, what to prepare for, the best doctors to contact and how quickly they need to tick things off their bucket list.
Cath now only drinks French champagne … she says she doesn’t have enough time to bother with the cheap stuff. All while hoping for a breakthrough in research.
Spearheading the fundraising to hasten this research is Neale Daniher. A legend in the world of AFL, a 55 year-old former athlete, a tall strong country boy with nine siblings, four children …and Motor Neurone Disease.
He’s sharp and funny and engaging, much softer say his sisters since he was diagnosed. But his arms are losing their strength, his hands are weak and he slurs his words.
Yet as his body slowly gives out, he still manages to find the positive - grateful his legs still work and in May he was able to walk his daughter Lauren down the aisle.
Two and a half years after his diagnosis Neale is one of the most public faces of MND. As he says simply, there is never anyone around long enough to promote the cause.
“Play on” is his mantra … so on Monday June 13th you’ll see a lot of famous faces sliding into a pool of icy water in the middle of the MCG just before the Collingwood-Melbourne game. The Big Freeze is run by the Cure for MND Foundation. Funding means research and clinical trials and a breakthrough in the lab may mean a cure.
You might even remember the ice bucket challenge that took off on social media a few years back. It was raising money for ALS, Amyotrophic Lateral Sclerosis, one of the five forms of MND.
Working hard on this campaign is Pat Cunningham. He knows it's probably too late for his wife Ange, but a breakthrough may not be too late for Cath or Neale or the two people diagnosed every day in Australia. With a life expectancy of just two and a half years, something has to be done to slow and eventually stop this horrific disease.
But while they wait, Cath and Grant have a lot of living to do. As they remind each other, "you can visit pity city but you can't live there”.
I sincerely hope our Sunday Night story will prompt some pretty significant fundraising, because that is what is needed right now. These families who welcomed us into their lives in order to raise awareness … they made me cry but they also made me smile. They really are an inspiration. If you want to donate or help, please go to www.cureMND.org.au.
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