• MARCH 3, 1998
With a little help from her FRIENDS
Theresa Byrnes’s friends want to save her life,
but to do so means financing a
race between medical research and a disease that for the moment is incurable.
MELISSA SWEET reports on a charity that began at home.
MELISSA SWEET reports on a charity that began at home.
It sounded so simple at the time: they would hold a charity ball, raise a few hundred thousand dollars or so to support medical research, and save their friend, Theresa Byrnes, from an incurable disease.
“We got wised up pretty quickly,” says Gabrielle Dons ruefully, recalling the early struggles of the Theresa Bvrnes Foundation. It was difficult enough negotiating the bureaucratic maze to set up their charity, let alone trying to raise money.
“We spent about 12 months running round in circles and couldn’t get a penny,” says Peter Lewis, another of Byrnes’s friends who helped establish the foundation.
“The first thing we did was send out 100 letters to our friends saying, ‘send $100 now’. We didn’t get anything back. No-one really acknowledged them. In the early days, we wrote to Coca-Cola, asking them to help save Theresa’s life. They offered us two cases of Coca-Cola for our next function.”
Byrnes, 29, began to realise there might be something seriously wrong with her health just over 10 years ago. She was becoming more clumsy and walking was getting harder. One day she came home upset, after staggering along the road and being abused by a carload of males for being drunk.
At first doctors feared she had a brain tumour, but after many tests they made another grim diagnosis: Friedreich’s Ataxia (FA), a progressive, neurodegenerative disease, which is slowly destroying her muscle control. Her legs are worst affected — she has been in a wheelchair for two years — and the slur in her speech is getting worse.
First described in 1863, FA occurs when a child receives one copy of a defective gene from each parent Doctors estimate that one in 50,000 babies will have FA, although symptoms do not usually develop until they are children or teenagers. Sufferers gradually become more and more disabled — while retaining intellect and consciousness — until they are totally dependent. The speed with which the disease progresses varies greatly, but most sufferers die from cardiac complications during middle age.
After her diagnosis, Byrnes swore her family to secrecy and hid FA from most of her friends until it became impossible to disguise.
Peter Lewis recalls that word began to go out about three years ago “that Theresa was dying and nobody was doing anything about it”. Byrnes and several of her friends — Clare Baker, a fashion designer; Dorn, a computer programmer; Cath Dwyer, ABC broadcaster; Jason Harty, journalist; Andrew Heys, management consultant; Michelle Huntaman, public servant; and Lewis, a NSW Government press secretary — formed the foundation. They met regularly, wrote letters, organised benefit gigs. The charity ball never happened: it was too big and too expensive an idea.
In the early days, there were also some skirmishes with the FA Association of NSW, which then had a different agenda. And they faced stiff competition for charity dollars from the many hospitals, research institutions and charities which employ PR experts to help highlight “their” disease and win public support and funds.
But, as Lewis says, the foundation was lucky to have such a good “product ; not only is Byrnes articulate, attractive and young, but her art fosters creative fundraising efforts.
The committee is now skilled at extracting help from friends and contacts. A typical story is Byrnes bumping into a former neighbor at a pub last year, performer Chris Marshall. Soon after, he did a fund-raiser, which added another $5,000 to the foundation’s coffers. Many artists, including Charles Blackman, have donated works to the foundation’s charity art auctions. Altogether, the foundation has raised more than $200,000 to date.
Each time I’ye attended a committee meeting, I can’t help but wonder how members maintain their energy and enthusiasm.
“When you feel like it’s too much hassle, you just think of Theresa, She’s such a motivated person herself it seems a bit lame to say you’re too busy,” says Cath Dwyer.
Dons adds that many on the committee became close at high school after a friend committed suicide. It had been completely unexpected, Huntsman says: “After he committed suicide we were thinking, was there something that we could have done to stop him? Subconsciously we must have had a strange feeling of deja vu [ Byrnes became ill], that here was a friend facing death again. To not do anything would have been just too awfuL” Dorn emphasizes: “We really do care about each other.”
The social commentator Eva Cox says the foundation’s work is an example of “social capital, a concept recognising the value of working for the greater good of the community, rather than just for self or family. She argues that many people have become disillusioned with the values of self-interest in which altruism tends to be regarded as something for “suckers”.
She adds that many people get a buzz out of giving: “Doing something good for others can b a huge high. People forget that you don’t just feel good by owning.”
Byrnes, who last year received the Young Australian of the Year NRMA NSW Community Service Award and is writing her autobiography, has an incredible ability to find positives in adversity. This may stem from her parents, who are marketing and sales consultants with a company called Great Ideas in Business.
Joe Byrnes usually doesn’t talk much about what is happening to Theresa, trying to forget it by throwing himself into his work, teaching executives in big companies about optimism and how to live in the moment.
“We were devotees of positive thinking gurus . . . before they were called New Age, he says. “We’ve always believed that problems are just opportunities dressed in work clothes... that something good will come from every disaster.”
But you sense that Joe Byrnes has had a terrible struggle to practice what he teaches. “Sometimes my imagination is carried away with what is going to happen and I just force myself to live in the present I think of children who’ve been killed in car accidents and I think to myself at least we’re blessed that we still have our daughter and just to enjoy the wonderful, joyful, blissful girl that she is. I try not to think about it too much. Every time you think about it, it really is heart-breaking. If I was a drinking man, I’d be drunk every night”
Theresa’s mother, Lorraine, breaks down in tears and anger many times during our interview, She spends much time helping Theresa, with fund-raising and with practical assistance, but berates herself as a failure for not raising enough money and for not saving her daughter’s life. She is furious at the big companies that have ignored her many letters asking for help,
Two years ago, she sent 500 jars to companies asking them to save five-cent pieces. “Guess how many I got back,” she laughs wildly. “None. Every rejection letter is like someone getting a knife and twisting it in my heart. The thing I treasure most, I can’t help. She is literally fading in front of my eyes.”
Byrnes fears being remembered for FA rather than her painting. She initially had reservations about the foundation being named after her: “The last thing I ever wanted was to be identified someone with a disease. Then I thought no-one else is going do it. I thought the most important thing is to save my life.”
The foundation’s hopes doing just that had a great boost in 1996 when a team of European and American scientists identified the genetic mutation which causes FA. The discovery has raised hopes of using gene therapy or more conventional pharmacological approaches correct the faulty gene or counteract its actions. Founda.tion members hope that a gene therapy may be developed time to save Bymes. But scienfists are more cautious. They emphasise that gene therapy generally is still in its infancy, with many obstacles to overcome.
Dr Ian Alexander, the head of gene therapy research at the New Children's Hospital, has received the foundation's backing to employ a dedicated FA researcher under the auspices of a Theresa Byrnes Fellowship.
“Gene therapy trials for FA are still a way off,” says Alexander. “I’d hate to put a figure on it and get people’s hopes up,
“I’ve got a lot of admiration for what Theresa and her friends are doing, but it may be that the benefits from their work come too late to help Theresa.”
However, there are encouraging signs of movement Professor Bob Williamson, director of the Murdoch Institute in Melbourne, says Australia has 20 researchers working on FA, compared with just one several years ago. He recently convened a meeting bringing together all Australian researchers with an interest in the area in an attempt to ensure research is co-ordinated, and is planning an international meeting in Adelaide.
“I’m hopeful that even those who are fairly severely affected may be able to benefit in the next five to 10 years from the new forms of therapy that are coming,” Williamson says.
It is uncertain whether Byrnes will benefit directly from the foundation’s efforts. But there can be no doubt that its work has already had a tremendous impact, increasing public awareness of FA and raising its profile within the medical research community.
Each time Byrnes appears in the media, the foundation receives floods of letters, including some from families who have realised for the first time what is wrong with their child.
Pity is one of the few emotions which Byrnes does not inspire. “I have so much going for me. I have always followed my heart and spirit and because of that I am fulfilled, So many of my dreams have come true. I have the best family, and my experiences with Aboriginal people in Arnhem Land have given me great strength. I am very connected with the Australian landscape.
“I feel as though I have followed all the things that my soul needs. I have my painting and that is always growing and developing.
“I feel as though I am doing everything in my power to cure myself. No matter what level of deterioration I evolve into, I will still love life.”
Byrnes was recently invited to address a crowd in Young as an Australia Day Ambassador. She talked about “how anything is possible and if an obstacle comes into your life — such as cancer, AIDS, divorce, any kind of abuse, a car accident, FA, bankruptcy — it’s amazing what a human being is capable of . . . Negative things are doorways, not only to recreate yourself but to help improve the human condition.”
• On April 1, about 200 of Byrnes’s paintings will be auctioned in her studio, at Scots Church in the city, followed by a week-long exhibition. For more information about the foundation, write to P0 Box 1888, Strawberry Hills 2010, or phone 02 9262 3329.