I have decided to raise money for Histio UK as a colleague made me aware of their work following his baby son's diagnosis with LCH.

Nicks Story:

Casper was diagnosed with Langerhan's Cell Histiocytosis (LCH) in July 2018 when he was only 5 months old. About 50 people a year in the UK are diagnosed with LCH, and most of them are kids. Classed as a cancer, it affects the immune system and can manifest almost anywhere in the body - most commonly the skin and bone, where it cause rashes, lesions, and bony growths.

Casper has what's called multi-system LCH; it affect his skin, bone, gut, and possibly his bone marrow and liver too (tests were inconclusive). He underwent two six-week bouts of chemotherapy and steroids straight after his diagnosis. In simple cases of LCH this is often enough to get rid of the disease. Sadly it didn't work as well as hoped with Casper, who has an unusually complicated form of the disease (so much so that his case has been written up by a researcher for a medical journal).

Fortunately Casper has a particular genetic mutation that has enabled another treatment approach, and since November 2018 has been on an experimental gene therapy which has basically turned his symptoms off. How long he can stay on this treatment we just don't know; there are only about 16 children in the UK on this treatment and none of them have been on it very long, and dealing with LCH - especially multi-system - is very much a process of long-term management of the disease.

Casper is now 16 months old and thriving, but research into the histio family of diseases is absolutely essential to continue to fight it, for him and for all the other people affected. LCH is quite similar to leukaemia in many ways but much lower profile, and receives far less funding.