Neil Reid first became ill in 2012 and was eventually diagnosed with an autoimmune condition. For three years this condition mostly affected him during the summer months, leaving him debilitated and exhausted. Unfortunately, during 2016, Neil’s condition worsened and after undergoing various invasive tests at three different hospitals, he was finally diagnosed as having Haemophagocytic Lymphohistiocytois (HLH) in addition to the autoimmune disease, at Addensbrooke’s
Hospital.

HLH is a cruel and rare disorder of the immune system that is life threatening and in too many cases a life taker. Neil endured numerous kidney biopsies, bone marrow biopsies, scans and every test that you know of to get a diagnosis. These tests continued for four months so that the progress of the disease could be tracked and the treatment could be changed accordingly.

What made Neil unique, and harder to treat, was the fact that the doctors could not identify what had started the HLH and this was further complicated by his autoimmune condition. The treatment that they tried involved various forms of chemotherapy, autoimmune suppressing treatment and dialysis, which made him lose his hair and
feel very very unwell. The doctors at Addenbrooke’s had the best expertise in the country and did try pioneering treatment to save his life when recommended treatments had no effect. Ultimately the HLH caused Neil to go blind; lose his ability to walk; attacked his kidneys, liver, lungs, brain and his heart; and Neil spent the last three weeks of his life in a comma.

At the age of 34, with a wife and a 6 year old daughter, Neil lost his battle with HLH on the 19^th January 2017. The facts remain that due to the rarity of HLH, not enough doctors have the knowledge and /or experience of HLH or treating patients with it; and not enough research has been carried out into quick and efficient testing for HLH and the treatment of this rare disease. As of yet, the government does not provide funding for research into such rare conditions therefore fundraising to help this research and raise awareness is vital.

The funds generated in memory of Neil Reid will be donated to Histiocytosis Uk who fund research into rare blood diseases such as HLH. Any money donated will be used for this purpose and will hopefully help to save a life in the future. However, if you are unable to donate money to the fund but still want to be involved please sign up to become a blood donor as many people with this condition rely on donors to help them stay alive. More importantly, please help to spread information about HLH as this may save someone else’s life. Thank you.

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