How one little boy’s story inspired a blood cancer charity to save thousands of lives

shirley nolan and son anthony
Shirley Nolan with her son Anthony whose illness inspired her work

At the beginning of blood cancer awareness month, Joan McFadden tells the story of Shirley Nolan and the incredible, life-saving charity she set up in her son Anthony’s name

Anthony Nolan first made headlines in 1974, when Shirley Nolan set up the world’s first register to match bone-marrow donors with people in desperate need – because her son Anthony urgently required a bone-marrow transplant. It was a story that captured the imagination: a tiny boy and his courageous and determined mother inspiring sympathy and hope in everyone who read about them.

Early days: Anthony Nolan with his family. Today the charity Anthony Nolan helps three people each day find a life-saving match

Anthony was born with a rare blood disorder called Wiskott-Aldrich syndrome. The only cure was a bone-marrow transplant but none of his family was a match. A transplant using bone marrow from an unrelated donor had never succeeded, and there was no system to find matching, unrelated donors.

An amazing charity. It provided hope in the darkness when my friend Pip was diagnosed with leukaemia. Sadly she didn’t make it, but together we can make sure more people like Pip do make itOlivia Colman

But in 1973 Shirley was inspired by the story of a small boy, Simon Bostic, who had benefited from the first successful unrelated donor transplant. The Anthony Nolan Bone Marrow Register was established in Westminster Children’s Hospital, where Anthony was a patient. Shirley campaigned and fundraised tirelessly to make this happen, bravely continuing her efforts even after Anthony died in 1979, aged just seven, while waiting for a donor to match. Tragically these cases still happen today and the Anthony Nolan charity now works tirelessly in its aim to fulfill Shirley’s mission: to make sure that everyone who needs a stem-cell transplant can find their best possible match. More than 2,000 people in the UK are in need of a bone marrow or stem-cell transplant every year but 75 per cent of these patients won’t find a matching donor in their families – so they turn to Anthony Nolan to find them an unrelated donor.

Shirley Nolan died in 2002 but her legacy continues to grow, and the lives of more and more blood cancer and blood disorder patients are being saved. In 2019 more than 1,400 people received a stem-cell transplant. Shirley Nolan was a mother who never gave up on her vision to create the world’s first bone marrow register to find a match for her son, Anthony, and that vision is still to the forefront of everything Anthony Nolan does.

Nearly 50 years since it started, the charity Anthony Nolan (formerly the Anthony Nolan Trust) - the first of its kind in the world - has produced pioneering research and set up a register of potential stem-cell donors now totalling 800,000, and has had a major impact on survival for people undergoing stem-cell transplants worldwide. The charity also changed its strategy in 2012 to asking only for donors aged 16-30, as research had proven that donations from that age bracket made the most matches and had the biggest impact on saving lives. Shirley’s legacy is boundless, inspiring a community of Anthony Nolan supporters that includes medical specialists and researchers, donors and potential donors, grateful families and dedicated fundraisers and volunteers.

Dr Neema Mayor, head of immunogenetics research at the Anthony Nolan Research Institute, says: “Without our supporters, we wouldn’t be able to do what we do. Anthony Nolan’s supporters are a huge strength for us as a charity, and I’m very proud to put their support into action.”

I’m alive, I feel fabulous, and Anthony Nolan has kept our family together, stronger than everDeb Wortelhock

No one knows that better than Deb Wortelhock, 58, who is celebrating the 10-year anniversary of her transplant, after being told she had a very low chance of survival without a transplant. She lives life to the full, wanting her donor to know she has never taken that gift for granted. She and her family support Anthony Nolan at every opportunity. “We’ve done all sorts of fundraising to help others get the same opportunity I got. I’m alive, I feel fabulous, and Anthony Nolan has kept our family together, stronger than ever.”

Celebrity support: Olivia Colman is one of the charity's most ardent supporters

One of its most high-profile supporters is Oscar-winning actor Olivia Colman. After losing a close friend to leukaemia, a common form of blood cancer, Olivia was inspired to support the charity and became its patron in 2018. “It’s an amazing charity,” she says, “It provided hope in the darkness when my friend Pip was diagnosed with leukaemia, and found her a donor from Australia. Sadly, Pip didn’t make it – but together we can make sure more people like Pip do make it.”

Without your support, there is no cure

This article is an advertisement feature for Anthony Nolan.

Every day, Anthony Nolan matches incredible individuals willing to donate their stem cells or bone marrow to people with blood cancer and blood disorders who desperately need lifesaving transplants. 

You can help save more lives. Every financial donation helps give more people with blood cancer a second chance of life. Without your support, there is no cure.

Visit anthonynolan.org/savelives and help save lives today.