After a search of over 40 million volunteer bone marrow donors from Registries across the world, fifteen-year-old patient Taisha Taylor found an incredibly rare match just 30-minutes’ drive from her home.
Now aged 20, Taisha overcame a life-inhibiting disorder thanks to a lifesaving bone marrow donation from a complete stranger, Kirsty Burnett, in 2019. For World Marrow Donor Day (September 16), the pair are sharing their story to encourage more people to join the Welsh Bone Marrow Donor Registry.
Taisha, from Newbridge, was diagnosed with the rare inherited immunodeficiency disorder, chronic granulomatous disease (CGD) as a child. People with the condition have failing immune systems, leaving the body vulnerable to chronic inflammation and potentially life-threatening infections. Taisha was one of the first females in the world to be diagnosed and thankfully cured of the condition through a bone marrow transplant.
Due to the rarity of the condition, doctors attempted several treatments, all of which were unsuccessful. Taisha’s last hope of recovery was to receive a bone marrow transplant. After not finding a suitable donor within her family, Taisha was dependent on the generosity of finding a match from an unrelated bone marrow donor.
Talking about her illness, Taisha said, “It was agony. From the age of 10, every morning before getting ready for school, I needed to stretch for around 30 minutes just to stand up and head downstairs.
“Over the years I received lots of treatments, but they were all unsuccessful, and that’s when the option of a bone marrow transplant was suggested.
“A lot of people don’t find matches let alone one that matched me so closely. I was so lucky to hear Kirsty had been identified as a donor. Our match was so close we were considered a ‘sister match’, which is almost unheard of and incredibly rare.”
Taisha has since made a complete recovery thanks to the generosity of her donor, Kirsty.
Kirsty, now aged 24 from Newport, joined the Welsh Bone Marrow Donor Registry as a volunteer during a blood donation session she attended.
Kirsty explains, “I signed up to the bone marrow registry when I was 17 during my first blood donation. There was nothing to it; I simply gave two extra blood samples and that was it. I was added to a worldwide database of around 40 million volunteer donors. That database is searched by clinicians across the globe every day for patients needing a match. I was never expecting to hear anything again.
Following a series of anonymous letters, Taisha and Kirsty met for the first time in December 2021.
Taisha added, “Now, Kirsty is like having a best friend and a sister all rolled into one.”
“Surprisingly, we don’t talk all that much about the transplant. She is part of the family now.
“I wanted to become a dancer and work with animals, but I couldn’t. But now I can. I hope Kirsty knows; it is because of her I am here living the life I could only wish for when I was sat on the floor doing those stretches every morning.
“Everyone has that chance of being matched and potentially saving someone’s life. My life has been saved thanks to Kirsty. I would encourage everyone to please sign up to the Welsh Bone Marrow Donor Registry and give someone like me the hope that better days will come.
“Be someone’s hero like Kirsty was, and still is, for me.”
World Marrow Donor Day (WMDD) is an initiative of the World Marrow Donor Association. Registries and transplant centres across the globe use this special day to thank all bone marrow donors worldwide.
It is a day to raise awareness among the general public and decision-makers about the importance of registering as a bone marrow donor and the impact of a bone marrow transplantation on a patient’s life.
Christopher Harvey, Head of the Welsh Bone Marrow Donor Registry, said, “To put it simply, we need more young people to join our Registry. Right now, three in 10 patients will not find the matched donor they desperately need, and that statistic rises to seven in 10 if you are from a black, Asian or ethnic minority background.
There are two ways 17 to 30-year-olds can join the Welsh Bone Marrow Donor Registry, by requesting a swab kit online or, like Kirsty, whilst giving blood. You can find out more by visiting www.welshblood.org.uk.
Christopher added, “Whether you’re eligible to join, or know someone who might be, please talk to young people about this life-changing Registry and help give more patients a chance to overcome their illness.
“The uses of bone marrow are extraordinary, from helping someone like Taisha with Lupus to helping blood cancer patients overcome their disease. We need as many people as possible to join the Welsh Bone Marrow Donor Registry.”
