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Kind-hearted staff and students from West Nottinghamshire College visited King’s Mill Hospital on Thursday (25th June) at a registration session to join The Anthony Nolan Trust’s bone marrow register.
Shirley Nolan, who has died at Adelaide aged 60, set up the world's first bone marrow donor register after her only child, Anthony Nolan, was diagnosed with a rare disease that could be cured only by a bone marrow transplant.
Anthony Nolan was born in 1971 with Wiscott Aldrich syndrome, and had no resistance to disease. He suffered a brain haemorrhage at birth and, once his condition was diagnosed, doctors at the Adelaide hospital where he was born told Shirley Nolan that he was "incurable". In 1973, however, she discovered that a child in Britain with a similar condition had had a successful bone marrow transplant, and she moved to London to begin a search for a suitable donor.
Four years later Shirley Nolan opened the first Anthony Nolan laboratory while she and her son continued to wait for a donor. When not in hospital, Anthony was forced to live in isolation away from other children, for fear that even a minor infection could kill him. Their hopes were raised on a number of occasions when they thought a donor had been found.
Towards the end of his life Anthony Nolan was living with his mother near Ashford, Kent, in a converted ex-Army hut which was kept as sterile as possible. With only his mother and grandmother for company, his lonely existence and failing health had left him bearing little resemblance to the round-faced toddler of the early 1970s, and his mother described him as deeply disturbed. Despite her exhaustion, Shirley Nolan continued to help raise the £4,500 a month needed to fund the bone marrow unit at the Westminster hospital.
In 1977, fearful of a British winter, she decided to take Anthony back to Australia. However, his condition deteriorated and he returned to Britain. Doctors were unable to treat him with a new technique using cells from family members, and he died in October 1979, a few weeks before his eighth birthday.
Shirley Nolan was born at Leeds in 1942. After taking her degree at the Guildhall School of Music and Drama, she decided to become a teacher; in 1965 she was appointed Head of Drama at a school in Essex. Six years later she and her husband, Ted Nolan, emigrated to Australia, where their son Anthony was born at the end of 1971.
After Anthony's death, Shirley Nolan continued to campaign on behalf of the (now re-named) Anthony Nolan Trust. The trust today manages the world's largest register of potential bone marrow donors, bringing hope to those suffering from leukaemia, aplastic anaemia and immune deficiency conditions. "My greatest reward," she said recently, "has always been knowing that my little boy did not die in vain."
Shirley Nolan admitted before Anthony's death that she had considered euthanasia for him. "I felt," she wrote in her book A Kiss Through Glass (1979), "that it was both selfish and cruel to keep Anthony alive - to prolong his life of such suffering." But she never gave up the fight to keep him alive. When she herself, however, was diagnosed with Parkinson's Disease, she became increasingly involved in the South Australian Voluntary Euthanasia Society. She committed suicide on July 14.
Shirley Nolan was appointed OBE in 2000. In the same year the Anthony Nolan Trust provided its 2,500th donor for a transplant.
Terie Duffy,cord blood coordinator for Anthony Nolan, with donor mums
Today I got a message that I had been dreading the arrival of for some weeks now, the news that little Joel Picker-Spence aged 6, had passed away in hospital after his brave fight with leukaemia.
I was going to title this post as "Joel loses his fight with leukaemia", but it seemed unfair to suggest that he had somehow failed to achieve his goal to live, and besides it would not give him the credit that he deserves in relation to the vast amount of encouragement and motivation that he has given not only myself, but also the hundreds and thousands of people that have followed the story of one small boys courageous battle with such a great enemy.
Joel Picker-Spence did not "loose" his fight, he eventually bowed to the unrelenting disease that was his leukaemia, but to all those who bore witness to his smiles,laughter and love that he had for his friends and family, he was a real hero,as was his mum Anne, who was always by his side during his numerous hospital visits.
I have yet to hear of any hero that has ever truly lost any fight.
God bless you Joel.Our thoughts are also with Ann,Dan,Sean and Eva his smashing and so obviously loving family.
