Late in 1983, while managing a health food shop close to Damian’s hospital, I met David Good. He came into the shop to buy lunch. His face wore the look of a father with a loved child seriously ill in hospital.
It is impossible to describe this look. It's just something hurting deep in the eyes, a tinge of greyness in the skin, a vague helplessness about the manner. We all have the look when our children are suffering greatly, but it takes experience and desire to see it.
David ordered sandwiches, and I asked about his worries.
His son, Lee, had just been admitted to hospital suffering from Acute Myeloid Leukaemia and they were having a pretty rugged time. Lee was just six and a half years old. I popped over to see them that night after work, and kept in touch for the next couple of days.
Damian was admitted for regular treatment on November 2nd and was put into bed next to Lee. This seemed a wonderful idea as Damian (the Veteran) could guide Lee (the Novice) through some of the mysteries of early treatment, while the families could share the emotional load.
In those few days, we grew to love the Goods – Lee and Jenny, David and Anthea ‑ and sometimes shed a quiet tear as we heard Damian instructing Lee about his treatment.
"It only hurts for a couple of minutes, Lee. After that you don't feel it.” Or, "When you've had as many lumbar puncture's as I've had, you just get used to it".
Damian died on December 29, 1983, but we continued our friendship and support with the Good family.
During an evening of companionship and reflection with David and Jenny Good in January 1984, we compared our rocky rides with sick children. Lee Good was in the throes of treatment and the Goods were struggling with medical red tape, dispassionate doctors, family pressures and the slow grief of watching their son die.
As conversation lulled, Jenny burst out with, “We need an organisation that can help families while our kids are sick; not just when they die”.
It was a “light bulb” moment. What the Goods needed, and we had needed, was practical help and emotional support. We had been lucky with support from family and friends, but there had been weeks of exhaustion and isolation.
There were groups to give sick children happy experiences, and groups to help us grieve for dead children. But practical help and emotional support was left to family, friends and communities. Many, like us, had some measure of assistance, but there are limits to the endurance of family and friends when children may be ill for years before recovery or death.
Jenny’s inspired idea triggered frantic activity. I approached all my influential friends and business contacts with a draft proposition. The idea was given support by everyone; some promised time, some donated goods, some offered money.
I spoke to the management of the printing company I worked for at the time, and they immediately offered to do all printing (and print preparation) for the embryo organisation without charge. As a director of OST Friendly Society, I broached the subject at a Board Meeting. It was received with great enthusiasm and the Board offered support in the form of a tiny room to house a telephone and answering machine, plus administrative support. This support grew rapidly until OST became an integral part of early Very Special Kids growth and development.
We sent notices to all available media and were thrilled at the response. Jo Wiles wrote a wonderful story in New Idea (6 October 1984), Channel 0 (now Channel 10) interviewed Nariida and me on a current affairs programme, there was a story in the Melbourne Herald, and radio interviews on 3AW, 3DB and ABC Local Radio. We were almost overwhelmed at the joyful support we received from the public and the media. The only stumbling block was resistance from the Western Medical Profession who saw “no need for another organisation”.
Despite this, we persisted and the news of our plans spread rapidly. St Mark’s Anglican Church in Camberwell (my parents’ church) allowed us free use of a meeting room for the inaugural meeting of our group on 30th October 1984 and, against all odds, Very Special Kids became a reality on that night. At first, just a group of generous, untiring people who spent their spare time working with frightened and grieving families to ease the way a little. Nariida and myself, with David and Jenny Good, supplied the motivation, leadership and money, while others joined us with enthusiasm, ideas and energy. A committee of ten dedicated souls joined us, the four Founders, to nurture Very Special Kids, support Jenny’s inspired vision, develop a constitution, Statement of Purposes, business plan and regulations, and take part in all the intricate requirements of building a new not-for-profit organisation.
By Christmas 1984, we were caring for twelve families whose children were battling life-threatening disorders, providing sibling support and organising family days to give them a little fun together.
Throughout this time, we were often told by doctors that there was “no need” for another organisation. There were groups for grief and to entertain sick children. Family support was “government business”, they said. We disagreed, and the response to our work from families we contacted confirmed our thoughts and Jenny’s inspiration.
By early 1985, we were well organised, with a constitution and rules preventing misuse by those wishing to promote particular therapies or philosophies, a beautiful logo (drawn by myself and artwork prepared by Jenny Snow, a graphic artist), and more than a dozen families being supported by members. But we realised we needed training, more volunteers and someone with expertise and time to guide Very Special Kids volunteers on our behalf. We interviewed a number of wonderful people but, for one reason or another, could not find a perfect match for our organisation.
Margaret Noone is a Nun who had spent time looking at support organisations overseas. She was sent to us by a chaplain at a major hospital who was aware of our work. Margaret saw the need for and uniqueness of Very Special Kids, and asked if she could work with us in some capacity.
Nariida and I interviewed Margaret at our home in Croydon, together with our new Great Dane and Honey (Damian’s cat). Proceedings were disrupted for a short time when we discovered that the dog had eaten all the paté Nariida had put out as a special treat for our guest. Despite this, Margaret seemed at home with us, and shared our vision for an organisation that could support families through all the challenges, battles, terror and exhaustion of loving a child with a life-threatening illness.
Margaret joined Very Special Kids as our Family Support Coordinator in June 1985, promising to work half time for a low $10,000 per year. At that time, Very Special Kids had about $1000 in the bank. The committee looked at me as if I was mad when I told them I wanted to employ this lady without the money to pay her. “Don’t worry,” I said, “I believe the money will turn up. If it doesn’t, I’ll mortgage the house to pay her.” Then I crossed my fingers and hoped Nariida would support me.
About three months later, after using some of our savings to pay Margaret’s salary for the first three months of her tenure, just as I was wondering if, in fact, I would have to extend our mortgage, the Myer Foundation granted us $10,000. Exactly the amount we needed for the following twelve months. I was delighted and relieved.
Very Special Kids grew, and we became aware of some more opposition from the medical profession. On investigation, we found that a major source of opposition was a prominent haematologist. He objected to our use of intravenous ascorbate for Damian, and saw Very Special Kids as some sort of renegade organisation intent on converting everyone to what he saw as dangerous practices.
This doctor said, unequivocally, that while I was involved with Very Special Kids, he would not allow it to operate in his hospital (a major hospital in Melbourne). He also made public statements about our use of intravenous ascorbate, claiming that it was “tantamount to child abuse” and that, in his opinion, we had killed our child.
I tried to meet with the doctor, to show him that the constitution and rules of Very Special Kids prevented anyone, including me, from promoting any form of therapy. I felt sure that he would see that the organisation was there to help families – the only organisation of its kind in the world at that time – and deserved everyone’s support. I saw no reason why we should not forget past differences and work together.
The doctor refused to see me or change his threat.
I felt I had no option but to resign from Very Special Kids and sever all contact. It seemed the only way to allow it to flourish. I wrote to the committee, telling them the reasons for my resignation and wishing them well. I also advised the doctor of my decision. It broke my heart as I said goodbye to another of my ‘children’. While VSK was Jenny Good’s idea, I had fully immersed myself in its gestation and birth, and hoped that, in time, VSK would become my primary work. In the face of obdurate opposition from members of the western medical system, I had to release my dream for others to nurture and grow.
Today, Very Special Kids is a wonderful organisation under the direction of a professional and dedicated board, with a counselling and respite centre, and hospice in Malvern, a suburb of Melbourne. Many families continue to be supported through dark days by the wonderful staff and volunteers. My son, Sean, worked as a volunteer for some time and gained great joy and fulfilment from this work. Some time later, I met Jenny and David’s daughter, Anthea, as she was volunteering for VSK.
I rejoice that the work, begun by David, Jenny, Nariida and myself as a memorial to our sons, Lee and Damian, continues to prosper and grow. However, I am sad that I cannot work with Very Special Kids and that the original committee, those warm, generous, dedicated people, have never been truly acknowledged nor thanked for their work. But I know that my work, with Nariida, Jenny, David and those wonderful committee members, was instrumental in the genesis of VSK and, without us, it would not exist. For that, I am proud.
Damian Coleman and Lee Good brought miracles of sunshine, laughter, strength and honesty to many people. They inspired life changes and the birth of VSK; our boys live on in its work.
· First Very Special Kids: Lee Good, Damian Coleman
· VSK Founders: Jenny Good, David Good, Nariida Coleman, John Coleman
· Inaugural Committee: Robert Nicoll, Cyril Wood, Mary Lynch, Beverley Touzel, Raelene Nicoll, Sandra Lapham, Wiiliam Ryrie, Kenneth Ring, Roma Wood, John Bentley, Joy Bentley.
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