Tom was just 21 when he died in March 2025. He died from a complication triggered by Glandular Fever (Epstein Barr), called EBV-HLH. I started this Charity to raise money for much needed research, awareness and support.
A rare and life-threatening complication of the Epstein-Barr virus, the virus behind glandular fever
EBV-HLH will look like Glandular Fever until HLH takes over and its then usually too late. A high temperature means it can get diagnosed as Sepsis.
We are funding active research by Prof. Claire Shannon-Lowe, at The University of Birmingham. Claire is lecturing and sharing research worldwide.
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We are raising money for a team of Scientists doing vital work on EBV-HLH. Prof. Claire Shannon-Lowe at University of Birmingham. Every pound we raise goes directly to them.
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EBV-HLH is most often fatal. If you've lost someone to it, we want you to know you're not alone. We're building a community of families who understand this particular grief — because very few people outside it will.
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Whether you want to donate, fundraise, or simply share Tom's story — every bit of support helps get more money to the researchers who need it.
Donate today →What appeared to be glandular fever took a devastating turn within weeks. EBV-HLH is rarely recognised — until it is too late.
My only child Tom 21, was fit, bright, happy, funny, kind & dare i say handsome. Tom was in his second year of Agricultural College when he got Glandular Fever (EBV). Tom came home after a week & progressively went downhill. Tom went into hospital where he was so weak & disorientated & his blood count starting falling with a raging temperature -everyone was saying Sepsis as I think is often the case with misdiagnosis. One doctor as he went into Intensive Care recognised EBV HLH & contacted Jessica Manson in London but although they tried it was too late & Tom died 8 days after being admitted. My aim with this Charity is to fund much needed research, to raise awareness & hopefully give support. Thank you.
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Understanding the condition
What is HLH (Hemophagocytic Lymphohistiocytosis)?
HLH Hemophagocytic Lymphohistiocytosis is a rare, life threatening, immune system disorder, where specific white blood cells become overactive and attack the bodies own tissues and organs. It is a severe imflammatory response, causing multi-organ failure, and requiring urgent medical care.
Why is it so difficult to DIAGNOSE
In the early stages, EBV-HLH looks like glandular fever — fatigue, fever, swollen glands. By the time the immune reaction escalates, it can move extremely fast. Without prompt recognition and treatment, it is frequently fatal.
Why does research matter so much?
To move forward with any disease you need Research. CSL is working worldwide with Researchers on EBV-HLH. We also need funding to raise awareness to the NHS.
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August 28, 2026
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August 28, 2026
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July 22, 2026
We're a family raising funds for two research teams working on EBV-HLH right now. No admin fees. Everything you give goes directly to the science.
We are a fundraising charity, not a clinical service. Nothing here constitutes medical advice. In an emergency, call 999.
© The Tom Towler EBV-HLH Charity | Charity number: 1218180
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