Tom's Story | The Tom Towler EBV-HLH Charity

Tom Towler. Remembered. Making change.

Tom was funny, kind, and full of life. He passed away in March 2025, aged 21, after glandular fever became something none of his family had ever heard of, EBV-HLH. This foundation is his legacy — and our promise to make sure others don't face what he did without warning.

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Tom Towler was 21 years old and in his second year of university when he became ill in early 2025. He was funny, fiercely loyal, and loved by everyone who knew him. To begin with, everything pointed to glandular fever — a common viral infection that most young people recover from without lasting harm. His family weren't worried. Not at first.

Nobody knew what EBV-HLH was. Nobody had heard of it. That's the problem — and it's exactly what this foundation is here to change.

Tom was eventually diagnosed with Hemophagocytic Lymphohistiocytosis triggered by the Epstein-Barr virus — EBV-HLH. His immune system, attempting to fight the virus, had turned catastrophically overactive. The condition is rare, fast-moving, and frequently fatal if not identified quickly.

Despite the efforts of his medical team, Tom passed away in March 2025. He was 21 years old. His family, still processing the grief of his loss, made a decision: they would channel everything into making sure Tom's story was the last time a family had to say they'd never heard of EBV-HLH.

EBV-HLH is not exceptionally rare — it is exceptionally underdiagnosed. The symptoms in early stages look like dozens of other illnesses. Without clinical awareness, without fast-access diagnostic tools, and without research into treatment, patients and families are left without the fighting chance they deserve.

Tom's foundation funds the research, builds the awareness, and creates the community that could give the next family the information they need — in time.

Understanding the condition

What is EBV-HLH?

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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.

What is EBV-HLH specifically?

EBV-HLH is HLH triggered specifically by the Epstein-Barr virus — the virus that causes glandular fever. This is the form of HLH that Tom had. EBV is an extremely common virus; most people who contract it recover from glandular fever without lasting harm. In a small number of cases, however, the immune response to EBV does not stand down. Instead it escalates into HLH — and when it does, it can be catastrophic.

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Why is it so hard 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. Claire Shannon-Lowe is working worldwide with Researchers on EBV-HLH. We also need funding to raise awareness to the NHS.

WHAT WE STAND FOR

Our mission in three commitments

Fund research

We raise money for Researchers working specifically on EBV-HLH. Prof. Claire Shannon-Lowe at University of Birmingham. Every penny we raise goes directly to them.

Raise awareness

Most people have never heard of EBV-HLH. Most GPs have never seen a case. We want that to change — because earlier recognition means earlier treatment, and earlier treatment saves lives.

Support families

EBV-HLH is most often fatal. If you have lost someone to it, we want you to know you are not alone. We are building a community of families who understand this particular grief — because very few people outside it will.

Honour Tom's memory — help us fund what saves lives

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.

Make a donation

We are a fundraising charity, not a clinical service. Nothing here constitutes medical advice. In an emergency, call 999.

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Tom Towler. Remembered. Making change.