When Tom died I had nowhere to turn....there wasn't a Charity as such for EBV-HLH. To try and explain as I wish someone had to me, there are different types of HLH. Hemophagocytic lymphohistiocytosis - a severe, life threatening immune response where the body reacts with an over active and uncontrolled inflammatory response, basically your immune system attacks your own body.

Glandular Fever (EBV) in Toms case was what started HLH for him - called EBV-HLH. The worst type of HLH as, at the moment, there is only a 25% survival rate. We desperately need to raise awareness - my GP had never heard of it, nor had other doctors I have spoken to.

Tom was diagnosed with Glandular Fever when he went into hospital second week of March 2025 while at Uni for a raging temperature and hugely sore and swollen throat, his tonsils were bleeding. He was discharged with antibiotics. Five days later he came home. Three days later I tried to see a Doctor, they asked for his discharge notes and I was told he had been discharged and they didn't need to see him. Two days later we were A&E at 4am and he died one week later.

When Tom was in hospital and ended up in Haematology the Consultant, although too late, realised he had EBV-HLH. The consultant was speaking to the HLH team in London who were advising treatment - our only life line (more about this shortly).

The shock of Tom dying & the confusion, I really don't want anyone else to go through. I came home and before the funeral was googling Researchers for EBV-HLH it was so hard to find anything and only with the power of AI I found Claire-Shannon Lowe in Birmingham. I emailed her and she replied - the first person that truly understood what Tom had been through. Claire told me about their Research and I decided to start "THE TOM TOWLER EBV-HLH Chairty" wanting to raise funds to help them. A year later....the Charity got its Registered Number and I was able to get started. Claire has also sent Current Research Papers to me which have been uploaded here in the Research section so the website is a factual reference point in one place. Claire also had a diagram made for the website which explains EBV-HLH .

I phoned the Consultant in Norwich that tried to help Tom and said if I should get on the radio or television at some point, would she be the Medical person behind me. She said to contact Jessica Manson at UCL London the head of HLH that was advising her with Tom - my original life line for Tom.. Jessica Manson replied, we had a meeting and I learnt so much. I've had a meeting with Claire Shannon-Lowe too and it seems there is a little hope but FUNDS STILL NEED TO BE RAISED.

It seems EBV-HLH is more common than thought. Sometimes tests aren't done for Glandular fever, the patient is just admitted with a very high temperature and a week later dies of organ failure, signed off as a virus leading to Sepsis. SO the Researchers are currently lecturing and promoting the THREE F's RULE. The Three F's are, High Temperature, Falling Blood Count and High Ferratin. If all three are positive treatment for HLH should be started Immediately.

There is now the UK HLH Network where the Researchers share expertise. The HLH Forum now has 11 centres in the UK (one of the forums is Claire Shannon Lowe dealing specifically with EBV-HLH). Blood is being collected (Biobanking) from patients now with HLH whether they survived or died and being researched on for a better diagnostic test and general knowledge of the awful prognosiis. Claire is working with China, France, Japan, America and Australia and actively lecturing to get awareness out there.

In November this year, I have been invited to Sheffield Hospital where I will meet the Researchers, other parents who lost a child I think and the young up and coming Doctors there who will learn about HLH and EBV-HLH.

The most important thing is fund raising - the Researchers are there - they are on it - they just need funding.

I hope this has helped explain why I set up the Charity, thanks for reading. Mikki

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