Beats that save lives: DJ and documentary maker issues plea for stem cell donors

11 December 2024 - Press release

 

A couple from Deptford is urging young people to join the Anthony Nolan stem cell register to help patients in urgent need of lifesaving transplants. 

After experiencing three months of increasing fatigue and shortness of breath 33-year-old Theo Kotz, a music writer, documentary maker and radio host, was admitted to hospital in July 2024. Theo had also developed an unusual large lump on his neck. Test results showed he had acute myeloid leukaemia (AML). 

AML is a very aggressive and difficult-to-treat blood cancer. Theo’s best chance of recovery is a stem cell transplant: a treatment to replace his blood cells with healthy ones from a matching donor, helping him to regain his strength, return to his work and allow him to plan his future with his fiancé, actor and director Rebekah.

However, a suitable matching donor has yet to be found, which has been devastating for Theo and Rebekah. The couple are raising awareness of the need for more stem cell donors, particularly among young people aged 16-30.

Theo says: “Needing to have a transplant but not having a 10/10 match is a very complicated and lonely place to be. I need this treatment. With it we can be confident this disease won't return, and I won't always be looking over my shoulder worrying about a relapse. It's the key to being able to get on with my life. Plus, if people see my story and then sign up, they might match with someone else which would be worth it in and of itself.”

“Theo is from west Wales, loves Guinness, the woods, writing, the sea, his mum’s dogs, raving, running, dance music, folklore, documentaries, telling funny stories and, more than anything, he loves his friends and family. And we adore him,” says Rebekah. 

“We’re young, we’re engaged, and we want to get on with building a family. This experience has shown us just how precious even the small things in life are, and we just want to spend forever putting as much love into the world as possible. Theo is my best friend, my sanctuary. We have to find his genetic twin so he can get better.

“There’s an easy way to help people in Theo’s position. By signing up to the stem cell register you could stop someone, somewhere from experiencing this.

“I joined the register years ago because of an Anthony Nolan campaign that hit my social media, and I’d donate in a heartbeat. This is why we must keep amplifying this message - if you can’t join up yourself just share it with someone else. There's something for everybody to do, to take action.” 

Unfortunately, not all patients who need a transplant can have the treatment straight away. There may be no match in their family or on the stem cell register.

Theo is positive and is determined to marry his fiancé. He says: “Signing up is very simple and has got to be one of the easiest ways to do something truly selfless and potentially lifesaving for another person. It takes one swab.

“I really want to carry on living. I've got stuff to do, you know? The more people who join the register, the more people like me can be helped – which if you ask me would be pretty cool.”

Rowena Bentley, Head of Programme and Community Recruitment at Anthony Nolan, emphasises the urgency of the charity’s work growing the stem cell register: “Every new donor on the register brings hope to families like Theo’s.

“All it takes is a few minutes to complete a health questionnaire. We’ll send you a swab pack for you to swab the inside of your cheeks and send back to Anthony Nolan. Returning your swabs is crucial—it’s the only way to check if you could be the match that saves someone’s life.

“We’re particularly encouraging young men to join, as they are more likely to be matched to patients in need of vital stem cell transplants.”

Theo and Rebekah, along with their friends and family, are on a mission to ‘Get Theo Matched’. They are especially keen for people in and around the dance music and TV scene to join the movement to grow the stem cell register. Reflecting on the appeal Rebekah says: 

“Our friends and family have been incredible already, getting colleagues and schoolmates and strangers and more to sign up. Every single registration might just save someone’s life and give a family like ours a reason to hope. I'm really grateful that we're doing this appeal, but I really wish we didn't have to do it. We’re in a frantic race against time on top of what is already a terrifying situation.

“Please sign up— not only for Theo’s sake, but for every person affected by blood cancer. The more people on the register the more lives saved. I've been on the register for eight years. I may not, ever, be needed to donate, but I’m there just in case.”

Theo tragically lost his older brother to suicide in 2005, an experience that profoundly shaped his commitment to raising awareness and the importance of seeking support.

“I watched my mum go through the heartbreak of losing my big brother, and I can’t bear the thought of her having to endure that pain again – I need to stay here for her,” he says.

 

If you’re aged 16-30 and in good health, you can sign up to the Anthony Nolan register at anthonynolan.org/gettheomatched.