I found this information by pure chance whilst doing my weekly "sweep" for info relating to leukaemia issues....and it, i am not afraid to say,moved me to tears.
Shirley Nolan began the Anthony Nolan Trust in the 1970's to try and find a bone marrow donor for her son. Sadly Anthony died before she found a donor for him, but the work of the ANT over the last few decades has saved many others.
As i write this i have just put a bid on a book i found on EBay called "A kiss through glass" which i found for sale for the princely sum of 1 pence...no bids. This book was written by Shirley, and tells the moving and sometime harrowing story of her fight for her sons life and ultimately her having to cope with the inevitability of his death.I hope that i win this auction, no matter what the cost as i feel that this is one book that i just must read.
This is the post that i found reporting Shirley's death, and i was quite shocked to learn that in the end, faced with advanced Parkinson's, she took her own life. Shocked, but not judgemental, for Shirley set in motion the chain of events that even today is helping people to live....something that Shirley was unable to do. God bless her, and may we all hope that there are many more like her who, faced with a life that was touched by adversity and sorrow, had time to find the strength and courage to help others around her .
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.