Twenty months ago, Beryl Clark’s three children thought their mum was enjoying her Scotch whiskeys a little earlier in the day and a little more often, when her speech began slurring.
They suggested a recent dental procedure might have caused nerve damage and laughed it off, but seven months later, their light-heartedness turned into the cruel reality of the diagnosis of Motor Neurone Disease.
It was a shocking blow – none of the family knew what to say or where to start – but true to her nature, Berylie, as she likes to be known, drew up the battle plans for the fight ahead.
So says her daughter, Suzi Killen, who has been helping her five foot one, typical country mum, be proactive with the time that’s left to her.
What began as just a few mates on the front lawn of her Goondiwindi home for a sandwich, to help raise funds for research and awareness, turned into a sumptuous three-course sit-down picnic lunch for 210 in April, generously supported by friends, the Kindon ICPA branch and an equally compassionate and committed community.
Berylie herself made 17 aprons, 21 cups of apple sauce and 210 pieces of butterscotch toffee for the event, despite describing herself as “old and buggered”.
At the age of 70-ish, Suzi says she’s determined to do all she can while she still can.
“She hasn’t waited for the disease to dictate terms to her – she’s taken control as much you can with MND.”
It’s a fiercely held belief among the medical fraternity that research holds the key to finding a cause and a cure, and that’s where Berylie has been focusing her efforts.
Research takes money, and the lack of it is the sticking point for essential future research.
As MNDIRA associate professor, Anthony White, says, “Previous research has shown that the compounds are there, the knowledge to investigate is there, the techniques exist – we just need funds for researchers to do the work.”
The afternoon in the garden at Ogilvie raised over $30,000 and now Suzie reports that the Cornflowers Picnic’s final tally has been $32,666.51, which she said was an amazing effort by all involved.
Toowoomba Regional Council mayor, Paul Antonio, gave an emotional speech on his own family’s experience of living with MND, relying bravely on a little black humour to get him over the line.
Guest speaker, Dr Stephanie Williams, the research manager for Motor Neurone Disease Australia captivated the crowd with her passion, vision and energy for the exciting progress made so far in research and the importance research plays in accelerating that progress.
It was topped off by Goondiwindi Regional Council mayor, Graham Scheu, not just working as chief auctioneer but also playing the guitar and singing.
“It has been 20 months now since ‘those few extra scotches’ – Mum has since lost all speech apart from a few swear words, which she is allowed under the circumstances, and her ability to swallow,” Suzie said.
“She communicates using a white board, continues to play bridge like a demon, and is still the best Grandy ever, Mum and friend.
“Motor Neurone Disease can strike anybody at any time and the more I hear from others also affected, sufferers, family and friends, the courage required to live with MND is simply quite extraordinary.”
Perhaps the last word should go to Berylie’s youngest grandson, Tex, who was quietly singing a song in the back of the car one day, according to Suzie.
“The words came through to us – Row, row, row your boat, gently down the stream, Berylie, Berylie, Berylie, life is but a dream.”
Sally Gall
Based at Blackall, CW Qld, where I've raised a family, run Merino sheep and beef cattle, and helped develop a region - its history, tourism, education and communications. Get in touch at 0427 575 955 if you've got a story idea for me.
Based at Blackall, CW Qld, where I've raised a family, run Merino sheep and beef cattle, and helped develop a region - its history, tourism, education and communications. Get in touch at 0427 575 955 if you've got a story idea for me.
