I'm running the Farnham Pilgrim Marathon on September 18th 2011 on what would have been Esme's 3rd Birthday to fundraise for research into HLH.
My friends’ daughter, Esme Carter or Bubby, who was just 22 months, died in July 2010 after months of horrendous treatment at Great Ormond St Hospital.
Esme had been ill for a while with terrible fevers and was finally diagnosed with the disease Haemophagocytic lymphohistiocytosis or HLH at Great Ormond Street Hospital (GOSH) in May 2010. She spent the next three months at GOSH undergoing the most gruelling treatment. She had countless operations, tests and procedures. She was given regular chemotherapy, some directly into the spine and a cocktail of other horrendous drugs to dampen down the disease. After five days of intensive chemo conditioning she had a bone marrow transplant but Esme couldn’t tolerate this and spent four days in Intensive Care. She was on maximum life support until she deteriorated so much that doctors told us it was futile to continue. They turned off her life support in the early hours of 15th July 2010 with her mummy and daddy holding her hands reading her favourite book.
10 months after her death her parents discovered that Esme had had Leishmaniasis – a sandfly disease – and that this had probably caused secondary HLH. If they had discovered this at the time Esme would most probably be here with us today.
HLH isn’t cancer but it is treated like Leukaemia however the survival rates are much lower at around 50%. But unlike cancer, HLH is often referred to as an "orphan disease" meaning it strikes too few people to generate government-supported research. Research and treatment protocols are therefore funded and co-ordinated by charities. The Histiocytosis Research Trust [www.hrtrust.org ] is a charity that is working hard to evolve understanding of the disease, improve treatment and ultimately get more children better and home with their families where they belong.
Please sponsor me so that we can help other children with HLH, so they don’t have to suffer like Esme. Thank you for your generous support.
