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Shirley Nolan - my inspiration
Shirley Nolan was the woman who most inspired me, particularly through my own years of campaigning to save babies' lives. She was gutsy, determined and brave, and she told me that family was everything and was worth fighting for, at all costs, even if you did get up people's noses!
You may not know her name at all, but if I were to mention her son's name, you will probably immediately know what she was about. He was Anthony Nolan, and she founded the internationally famous Bone Marrow Register whilst she was fighting for his life in the late 70's. She would love the fact that his name is better known nowadays than hers, and is still actively saving lives.
I met Shirley when she first came to Britain from Australia and was campaigning throughout the UK to try and find a bone marrow match for her little boy who was dying before our eyes, from a rare condition which could only be helped by a transplant. But none of his own family were a tissue match, and in those days there was no such thing as a register. The only transplants available were those within families. But Shirley was the sort of woman who embraced that as a challenge, and she took her campaign worldwide to try and find a match for Anthony, and a register for everyone who would ever need the same life saving operation. She brought Anthony with her from their home in Adelaide, and they set up housel in a converted army hut near Ashford in Kent, where he had to be kept in a sterilised bubble. He needed 24 hour nursing, but she spent every spare minute campaigning for funds to tissue type volunteers from all over the world. She demonstrated outside number ten downing street and Australia House with placards, and was even arrested and cautioned. It was at this point that I first interviewed her, and started to understand what a lioness she was.
Highly intelligent, desperate and above all, a loving mother who would rather die trying, than let her child waste away. I liked her immediately, and offered to do everything I could to help the cause though I was only a regional reporter at the time. But I joined the register, and was blood tested and tissue typed. At one point, many years later, I was quite excited when I was asked back for further tests because I may be a match for someone in need, though it didn't turn out to be. But Shirley Nolan had that effect on everyone - she was inspirational. Her compulsion, though, was often criticised as self-destructive, and there's no doubt it destroyed her marriage, but she soldiered on. Sadly, she couldn't save Anthony and his death became a national and international tragedy in 1979. But by then his Anthony Nolan Bone Marrow Trust had 30,000 registered possible donors and 80 children on the waiting list for matches. At Anthony's funeral, a guard of honour was formed by the same policemen who had arrested Shirley in her early campaigning days. I never met Anthony. Few people could, as he had to live behind glass. But after his death, Shirley continued campaigning and this is when I got to know her a little better. She told me that nothing, absolutely nothing, was more important to her than her son and her own mother, to whom she was devoted.
"Family is the most important thing in life," she said. And she kept an urn of Anthony's ashes with her wherever she went. Later, I was sad to meet her after she'd been diagnosed with Parkinson's Disease and found it difficult to travel. It was her last visit to Britain, and she told me that flying was almost impossible because the Parkinson's made her arms move wildly, and she'd once struck a fellow passenger in the face! Her mum had also died by then, and she also carried an urn of her ashes, along with Anthony's.
I could sense she was losing the will to live that had made her such a dynamic force back in the 80s. She told me nothing else mattered now, except that the Register grow in strength. She said her perfect evening was spent in her living room at home, with two urns on the mantelpiece - that of her son's and her mum's. "They're with me all the time," she smiled. It didn't really surprise any of us who'd met her, that she chose to end her life, campaigning for euthanasia in Australia, and ultimately taking her own, alone and in a great deal of pain.
She was a terrifically strong force for good, even though she led a tragic life. Her campaigning saved so many lives. During the dark days after I lost my own son through cot death back in 1991, and while I was fighting for a life-saving campaign, I often thought of Shirley Nolan's ferocity and determination, and her steely strength often kept me going. Like her, my own campaign couldn't save my own child.
But there is much comfort from knowing that you've helped play a part in saving others. I thank Shirley for showing me how!
Anne Diamond.
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