British-born Shirley Nolan (1942 - 2002) worked as a drama teacher in Leeds, England. When she met her second husband Ted, they emigrated to Australia in 1971. They were broke but happy, and Shirley was appointed chief accountant for the Department of Health in the Northern Territory.
When she became pregnant, Shirley was determined to be at home with her baby until it reached school age. Anthony was born in 1972, but he suffered a brain haemorrhage and was eventually diagnosed with Wiscott Aldrich syndrome, a rare deficiency of the immune system.
The Nolan family returned to Britain for the most up-to-date treatment, but they were told that the only chance of saving Anthony's life would be a bone marrow transplant from family members who were compatible with Anthony's tissue type. Unfortunately, as none of Anthony's blood relatives were exact matches his only hope was to find a donor with the same tissue type. There was no register of possible donors that they could turn to, so Shirley set about starting one herself.
Creating a National Database
In her desperation to find a suitable donor for Anthony, she worked tirelessly to highlight the tragedy of the thousands of adults and children suffering from immune system deficiency, leukaemia and similar diseases, whose lives might be saved by a bone marrow transplant as well.
Shirley's marriage to Ted did not survive the strain of tending to the desperately ill child (he needed 24-hour care) and any time off she had, she spent campaigning for funds. She demonstrated outside 10 Downing Street1 and Australia House2 with placards, and was arrested and cautioned.
Anthony's life was short and tragic. Although a bright child, he was never well enough to attend school and only ever learned basic words. Mixing with other children would have been dangerous for him anyway, as he had no resistance to even the most minor childhood infections. By the time he was five years old, he was living in a converted Army hut near Ashford in Kent, which was hermetically sealed in a continually sterilized environment; or else he was in hospital in an isolation room.
By this time, Shirley had raised half a million pounds and set up a tissue-matching laboratory at St Mary Abbots Hospital in Kensington. This cost £5,000 a month to run. Volunteers were screened for their tissue type, and the results were kept on computerised records.
Sadly, all the campaigning could not help Anthony. He died in 1979 with his parents at his bedside. At the time of his death, the Trust established in his name 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.
Although devastated at losing her only child, Shirley determined to carry on in her son's name. She wrote the story of his life, A Kiss Through Glass, and toured the world fund-raising for the Trust, even though the constant strain was taking its toll on her own health. Although only 37 years of age, Shirley had Parkinson's disease. Determining never to marry again or have more children, she moved back to Australia and the warmer climate.
Within ten years of Anthony's death, she had given up campaigning and could no longer teach. Although she attended events to raise awareness of the Trust, she could no longer speak in public because the emotion of talking about Anthony caused her throat to constrict.
Awards and Success
Shirley's ambition was that everyone who needed a bone marrow transplant would be able to have one, and that each country would have its own register linked to the central one in Britain, which would be a permanent memorial to Anthony. Shirley lived to see thousands of successful transplants performed each year, and 100,000 names added annually to the donor register. The Trust is supported by Gary Lineker, whose son George received life-saving treatment for leukaemia through it. Other famous names also on the donor list include actresses Jenny Agutter and Pauline Collins OBE, and singer Robbie Williams.
For such a determined, feisty woman, the humiliation of being helpless in the grip of her own deteriorating condition finally destroyed her. She told friends that her greatest dread was waking up one morning to find herself completely immobilised. So desperate was she to avoid this scenario, that she joined the South Australian Voluntary Euthanasia Society. In her journal, she recorded her awful degeneration.
At times I cannot even move, speak or breathe. I am further demeaned by staggering, shaking, falling and appearing to be inebriated; I am beginning to stoop, my muscles too weak to hold my body upright. My feet are claw-like talons and recently my hands are cramped and have become extremely painful. It is a living hell.
Alone in her home, cuddling Anthony's little toy mouse and surrounded by pictures of her beloved son, she lay on her bed and injected herself with a lethal dose of drugs. The woman who had been such an advocate of life had written a last desperate letter to the world.
Here today, my last day, I am an advocate of death. I hope today I can end the horror that my life has become.
Shirley was a pioneer in the development of a register. She was really the first person in the world to think that we needed a structured organization to collect data that could be made available for people suffering from leukaemia and other illnesses on a voluntry basis.
- Professor John Goldman, British bone marrow transplant expert
She was a unique lady. She will be much missed by everyone who was fortunate enough to meet her and we will strive even harder to honour her life by finishing the task she began when she formed the Charity in 1974.
- Simon Dyson, Trust Chairman
A memorial service to celebrate Shirley's remarkable life was held in central London on Thursday, 14 November, 2002.
More info can be found at The Anthony Nolan Trust website.