2019 marks forty years since the death of Anthony Nolan, a boy who changed the world. In 1974 the world’s first register of potential bone marrow donors was created by his mother, Shirley, in the hope of finding a cure for the life-threatening blood disorder her son had been born with. The powerful story of Shirley and Anthony is at the heart of the charity and its brand.
Unfortunately, a match couldn’t be found for Anthony, who died aged eight in 1979. However, in the forty years that have followed, the charity Anthony Nolan has made more than 18,000 transplants happen in the UK. Shirley Nolan’s achievement means than 1,300 people in the UK are given a second chance of life each year; three a day.
More than one million stem cell transplants have taken place worldwide; these have only been possible thanks to Shirley Nolan’s vision. Before her death, Shirley shared her thoughts on Anthony’s legacy.
‘I believe that Anthony represented much more than the struggle to establish a bone marrow transplant programme. He represents the rights of the individual in our society, especially those of children and their basic human right of a chance to lead a normal, healthy life.’
One man whose relationship with the charity is closer than most is 46-year-old Alan Corley from Suffolk. Alan spent months in a room next to Anthony’s, in the children’s hospital where they were treated. Forty years on, he’s undertaking a series of fundraising challenges for the charity set up to aid his friend, cumulating with a plan to scale Everest in 2020.
Alan Corley was diagnosed with leukaemia when he was five and spent two years being treated at Westminster Children’s hospital, the very same hospital where Anthony Nolan was. As “one of the lucky ones”, unlike Anthony, Alan didn’t need to search for an unrelated donor. He had a stem cell match in his sister and made a good recovery without ever needing to proceed with the transplant.
‘Anthony and I were in adjoining rooms,’ remembers Alan. ‘I was six at the time and he was eight.
‘There was a glass window and during the day we talk to each other and play cards through the glass. We only saw each other really, there was nobody else.’
Speaking of his experience of living in an isolation ward as a youngster Alan says: ‘I had a painful time there, but I was one of the lucky ones. The second round of treatment worked, and I was released as an outpatient.
‘Sadly, during that time Anthony passed away.’
Alan recalls the initial steps taken by Anthony’s mother Shirley as she valiantly campaigned to establish the world’s first bone marrow registry, knowing that her son’s time was limited.
‘I remember Shirley doing her campaigning and we would all give her lots of support, but I never realised how much work she had done until a few years ago. I saw something on Facebook about the charity Anthony Nolan and wanted to do something to help.’ said Alan.
‘Just before Christmas my brother in law decided to give me a push and we talked about Everest. I’ve reserved a place for next year and this year I’m getting ready by doing lots of climbing and walking around the UK.
‘This is the first time I’ve fundraised, and it feels special because the charity is so close to my heart, having known Anthony.
The series of events started with a three-day trip to the peak district in the month, followed by three big loops in the Brecon Beacons, then conquering Ben Nevis (have these been done?). These events preparing budding hiker, Alan, to take on Everest next April.
Alan says supporting Anthony Nolan in this way has brought back many memories.
‘There are times I’ve been talking about this to people and I get emotional because it’s brought back so many memories, mostly good ones.
‘It was exactly 40 years ago this Pancake Day when my dad came down to the ward and cooked pancakes. He ended up making pancakes for the whole ward, including the nurses!
‘I read Shirley Nolan’s book which is called ‘A Kiss Through Glass’ – when I saw that title I felt really emotional. I knew exactly what it meant. In the evening, when the parents used to come down to our isolation ward to say goodnight, they would go to the door and give us a kiss through the glass.
‘I don’t remember a lot of the bad things. As a child, you don’t really realise what’s going on. My father stayed with me for over six months while I was in the ward and he got to know other parents and the other children, including Shirley.
‘It must have been very draining for the parents. At that time, only one in four children survived. He told me that he would see children playing on the ward and they would be gone the next day.
‘It feels amazing to know that more people survive today but there are still those who, like Anthony, can’t find a match. I want to do everything I can to help.
Alan says that raising awareness is as important to him as raising funds.
‘I found out that it takes £40 to get someone on the register, and I’ve set myself a target of raising £1,000. That’s just for now. I’m going to keep doing this. I’ve been inspired to keep going and keep raising awareness because it’s such a good cause.
‘My eldest daughter has joined the stem cell register and she’s really excited. She’s been talking to lots of people about it at university. Often people have only vaguely heard of it. When I tell them about the work the charity does, their reaction is always, “Oh that’s amazing!”
‘I’m really trying to promote this within my workplace too – I work for Royal Mail. It would raise so much awareness, not just amongst the 150,000 plus employees, but through their families and the publicity too. And all the money they raise would go to Anthony Nolan too. It would mean so much to me.
‘I just want to get the word out to tell people about this amazing charity and the work that it does. People should donate and join the register if they can – they could save a life.’
Henny Braund, Chief Executive at Anthony Nolan, said: ‘Shirley Nolan was a mother who never gave up on her vision to create the world’s first stem cell register to find a match for her son and others in need of a lifesaving transplant. While we’re all inspired by their legacy every day, few of us are lucky enough to have met them. Alan Corley spent months in a room next to Anthony’s, at the children’s hospital where they were treated. As we mark the forty-year milestone since Anthony’s death, and reflect on the thousands of lives saved since we’re privileged that Alan has chosen to share his memories of Anthony.
‘Without our wonderful fundraisers, like Alan, there is no cure. Every penny that Alan raises will go to fund the search for potential stem cell donors for children like Anthony, in desperate need of a match.’
Find out more about Anthony Nolan at www.anthonynolan.org