When Angie Cunningham was diagnosed with motor neurone disease she set two very clear goals for what time she had left – raise awareness and funds for fighting the incurable condition and provide her daughters, then aged 6 and 3, with the direction, guidance and life skills that only a mother can.
Both would become her legacy when she died, surrounded by family, on October 4.
MND is a condition without treatment and without cure. It is 100 per cent fatal and most people are given two years to live upon diagnosis.
Angie was diagnosed with MND in the middle of 2012.
Her parents Bill and Susie Woolcock said there was no time for tears or feeling sorry about the situation, at least not publically, Angie would not allow it. She had her goals to achieve and a life to live and she did so with strength, humour and happiness.
The Launceston-born woman had always been pragmatic, organised and driven, and her battle with this disease was no exception.
Bill and Susie describe how Angie, the middle child wedged between her older brother Sam and younger sister Amanda, was a tenacious child
“She just wanted to have a go,” Susie says. “She was very much an achiever, academically, sporting, it didn’t matter what.”
Bill adds: “I think she was a typical second child who had an elder brother who said ‘I’ve got to be competitive with him’ and that’s how she grew up with that competitive nature.”
The Woolcocks were not tennis mad but insisted all their children played sport so they grew up with the right temperament.
However, Angie’s talent, honed everyday by hitting balls against a fence built by Bill on their Relbia court, soon became apparent.
Aged 13, she became, and remains, the youngest winner of the Pardey Shield; a competition regarded as Tasmania’s most prestigious title for schoolgirls, which has been running for more than 100 years.
Angie moved to Melbourne for school at 14 to chase her tennis dreams and went to the Australian Institute of Sport in Canberra.
From there she played in all the junior grand slams, including the French and Australian opens and Wimbledon, where she finished runner-up in the junior doubles.
After her junior career was curtailed by injury, Angie returned to Melbourne for university and began working on the Women’s Tennis Association after graduating.
She spent the next 10 years based in London and working around the world with the biggest names in women’s tennis.
But it would be her work with the Cure for MND Foundation and prosecuting its mission: “To cure, to care, to make aware”, that would be perhaps her greatest achievement.
Before prime ministers and senior business leaders had buckets of ice water poured over their heads, before celebrities slid into freezing cold pools at the Big Freeze at the G, before average people across the nation challenged each other to raise funds for MND in a viral social media campaign, there was Angie and her husband Pat.
Along with Cure for MND Foundation founder Dr Ian Davis, himself diagnosed with MND, Angie and Pat were drivers of taking what was a vague disease that most had not heard about, let alone could describe, into the forefront of a country’s collective mind.
On the day Angie’s death notice appeared in The Examiner, hundreds of people lined Launceston’s Quadrant Mall to watch locals take the plunge into an icy pool.
The event, and gala ball later that night attended by AFL legend and MND sufferer Neale Daniher, raised more than $120,000 for the foundation that Angie and Pat worked tirelessly to help grow.
Bill describes his daughter and son-in-law’s approach to raising awareness of MND through coopting the ice bucket challenge from the movement in the US.
“Pat said, ‘Righto we’ve got to do this’ and he actually started it with Ange and their mates and it snowballed from there until even the prime minister at the time [participated].
“Pat works for the AFL and he knew they’d get more awareness with a Guinness Book of Records attempt for the most ice buckets at Etihad Stadium.”
“He’s driven it a lot,” Susie continues. “He was always on the phone doing something. And in the last week of Angie’s life Soph said, ‘Dad, when mum’s gone will you spend so much time on the phone?’
“He was incredible.”
Bill believes the events are so successful because as awareness increased, more people realised they knew someone with MND.
“You don’t realise how many people suffer from it here,” Susie adds.
“And it’s such a horrific thing. When you know you’ve got it there’s nothing you can do about it and your whole body just dies, literally. Your eyes and your hearing are about the last thing to go. It is cruel.”
In a terrible irony, Angie’s good friend and fellow Tasmanian Cath Baker, who cared for Angie during her illness, was also diagnosed with MND.
“Talk about rotten luck,” Bill says. “Cath had been absolutely marvellous with Ange.”
Angie knew MND was incurable when she was diagnosed in 2012.
“But she didn’t want to dwell on it,” Susie recalls. “She was very philosophical.
“When she told us, we all had tears and she said, ‘OK Mum, that’s it, no more tears’ so I could never get emotional in front of her, we had to tough it out.
“She wanted to live for the day. It taught us to live for the day too and be happy. And she was. In all the time, even when she was completely paralysed, she was happy.
“She used to speak through her communicator and she was joking with us … she was an amazing person.”
“When her and Pat were designing the ice bucket challenge, they said ‘laugh to cure’ because there is no cure so you have to be positive and laugh at life and laugh at in the face and that’s what she did,” Bill says.
“She also said ‘Dad, I’ve packed more into my life than other people if they live to be 80’. She was very philosophical about those things.”
Bill and Susie said Angie’s strength and determination helped her in her fight against MND.
“I’m sure her strength got her through a bit. She had pneumonia three times and it was her strength that got her through,” Susie says.
Angie’s voice was the first communication method to go but she was able to write for a while before her hands and legs froze, leaving her confined to a wheelchair and communicating via a spelling program that detected eye movement.
“I think if she couldn’t communicate she would have given up a bit,” Susie says. “But she could communicate and she had a wonderful husband and children to keep her spirits up.”
Knowing she would not be around for major milestones in her girls’ lives, Angie, with help from a friend, authored a 150-page book of photos and text.
It details her early life, relationship with Pat, motherhood and finally offers advice for the girls as they grow up without their mum.
Angie had four copies made; one for Pat, one each for the girls and one for her parents.
“She knew right from the very start what she had to do and she packed a lot in her four years,” Susie says.
“All little highlights that when I’m reminded of them, I can say, ‘Oh yes I remember that’,” Bill adds.
Susie said Angie and Pat were very open with the girls, Maggie, 10, and Sophie, who turns seven on Sunday.
“Pat and Ange had taken them through it very carefully. They’ve been amazing about how they’ve approached it. They’ve always talked to them about it,” she says.
“Life just went on for them and that’s what Ange wanted. She didn’t want them to dwell on anything and they were absolutely incredible with their mother.”
Bill says the girls get a lot of comfort from the book, which they read a lot.
In fact Maggie was reading passages from the book when Angie died.
“I’m sure Ange knew,” Susie says.
Angie wished for her ashes to be placed at Low Head, where the family has had a holiday home for many years.
Bill realised the deep love Angie had for Low Head while re-reading her book.
“The one that struck me the most was I didn’t realise the love she had for Low Head. She said, ‘I want to be at Low Head’.”
Angie’s ashes will be placed in a columbarium that looks out over the water.
“It’s a beautiful, beautiful spot overlooking the ocean and it has a lovely stone wall around it,” Susie says. “It’s lovely way to reflect.”
“It’s the most beautiful, peaceful place,” Bill adds. “And each year they have a function to toast absent and departed friends.”
Bill and Susie are confident Angie’s legacy will be the MND Foundation and her beautiful children.
“She has done everything possible to make sure they can find a cure,” Bill says. “The legacy will be the drive to keep the awareness up.”
Susie said Angie had amazing strength to accomplish all the things she did after her diagnosis.
“I find it hard talking about it but just her guidance with the children, she talked about her mistakes and she said in the book, ‘You're going to make mistakes in life but you have to learn from them’. That was important to her - guiding the children through life. She said she wouldn’t be here so she wanted to help them.
“She was amazing. She was a good friend to so many people, very loyal. She just got on with life and enjoyed it.
“She dictated her terms right throughout her illness. She knew what she wanted and how she wanted to live.”
For a woman who was a great organiser, whose fingerprints were all over her own memorial service, described as equal parts poignant and funny, the last word should be Angie’s.
Through her eye detection technology, Angie conversed with journalist and friend Hamish McLachlan.
In a wide-ranging interview published in the Herald Sun in April, Angie described what she hoped her girls would take from her story.
“It is just my story, in my words: my successes, and my failures, and the lessons I’ve learnt from them, especially the failures. I’ve also included my thoughts on important times in their lives where not having their mum around will be tough,” Angie told McLachlan.
“My friend gave me great insight into moments and days when girls tend to miss their mums more acutely, and so I have tried to imagine those times with them, and I’ve written down what I would say to them if I were with them.
“It might be wishful thinking, but I am hoping they get lots of messages from it. I am hoping they always feel they have the essence of me, bottled into that book. It will serve as a reminder of the times we’ve shared, and will also be there for them when they want to be connected with my way of thinking.”
What is MND?
- MND is a progressive, terminal neurological disease that can affect anyone
- Sufferers progressively lose the ability to walk, talk, eat, swallow, and ultimately breathe
- The estimated lifetime risk of being diagnosed with MND is 1 in 350 for men and 1 in 400 for women
- About 58 per cent of people with MND are under the age of 65
- Everyday at least two people are diagnosed with MND in Australia
- Everyday two people die from MND in Australia
- The average life expectancy after diagnosis is 27 months
- More than 2000 people are fighting MND in Australia
- To learn more or donate visit www.curemnd.org.au