I will be joining all those that are fundraising for Esme's charity the Histiocytosis Research Trust – I will be running (well walking due a groin injury which I won't mention again) a half-marathon on what would have been Esme’s 3rd birthday, 18th September 2011, in Farnham.  Thank you for reading this page, and thank you for your support. As a parent I can't tell you how much it means to me that you are contributing. 

 

With your help so far we have already raised a mammoth $33,700 for the Histiocytosis Association of America (HAA). Thank you. The money raised will be ring-fenced by the English charity the Histiocytosis Research Trust (HRT) for HLH research projects scrupulously vetted by the American charity the Histiocytosis Association of America. Your donation will help evolve understanding of the disease and improve treatment so other kids don't have to suffer like Esme. Thank you very much for your support. Big Love Marcus.x

 

About Jason and Kelly's beautiful daughter in their words... 

 

In May 2010 after weeks and months of terrible fevers and numerous trips to the doctors and various hospitals our daughter, Esme or Bubby as we called her, was finally diagnosed with the disease Haemophagocytic lymphohistiocytosis or HLH. She was transferred to Great Ormond Street Hospital (GOSH) where she spent the next 3 months undergoing the most horrendous treatment. HLH isn’t cancer but it is treated like Leukaemia however the survival rates are much lower at around 50%.

In her ten weeks of hell at GOSH 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.

Three weeks into the treatment she had a massive reactivation of what we thought was HLH. We watched helplessly as her temperature soared to over 40 degrees and her heart rate accelerated to 260 beats per minute (normal rate 100). They increased the chemo and the steroids and from then on it was a race against time to keep 'the HLH' under control to get her to Bone Marrow Transplant (BMT) to replace her faulty immune system.

A 9 out of 10 match cord blood from the States was identified and she started conditioning for Bone Marrow Transplant early July. This included five days of intensive chemo to wipe out all her bone marrow in preparation for the new cord blood cells.

While Bubby was brave, she also was fragile and sensitive to the harsh drugs and her rampant disease. Bubby’s little body couldn’t tolerate the chemo conditioning and after her transplant she 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.

In April 2011 - 7 months after her death - Jason and I requested that GOSH carry out further tests. It was then discovered that Bubby had been suffering from Visceral Leishmaniasis a sandfly disease. She must have been bitten by an infected sandfly in either in Spain or Crete in the summer of 2009. So we now know, if she had HLH at all, it was secondary to Leishmaniasis.

Bubby was the brightest, prettiest and sweetest little girl. We miss her dearly. We don’t know if we will ever get over losing her, we are not sure we want to. Our greatest sadness though is for Bubby herself, the suffering she endured and the life experiences she should have had.

We now want to help other kids diagnosed with HLH so they don’t have to suffer like Bubby.

About the disease and fundraising

 

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 and the Histiocytosis Association of America are both charities working to evolve understanding of the disease, improve treatment and ultimately get more children better and home with their families where they belong.

 

By raising money for HLH research projects we’re giving other kids a chance.

Many thanks, we really appreciate it

 

Jason & Kelly