Thank you to my Dad, Roger Willoughby, and his wife Pam who raised a fantastic £1150 in Spain by holding charity golf days and quiz nights.
Thank you also to all the Team Esme runners for the Farnham Pilgrim Marathon. We had 55 runners go out and 55 came back and it was a tough course for both full and half marathoners. Well done to all our runners.
We've been fundraising since we lost Esme, or Bubby as we called her, in July 2010 so here's a little background about our fundraising and Bubby's tragic story:
With your help so far we have already raised a mammoth $34,000 for the Histiocytosis Association (HA).
Thank you - see www.firstgiving.com/esmecarter
. We moved to the English fundraising website JustGiving to ensure that donations, wherever possible, can benefit from UK Gift Aid.
The money raised is being using for HLH research projects so your donation will help evolve understanding of the disease and improve treatment. So far we have funded two research projects ($100,000 together) for the HA. Our current fundraising is being used for another London based research project looking into gene therapy for HLH. This research project was chosen by the charity the HR Trust.
About our beautiful daughter...
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 Feb 2011 - 7 months after her death - Jason and I requested that GOSH carry out further tests. It was in April 2011 that it was discovered that Bubby had been suffering from Visceral Leishmaniasis, a parasitic disease carried by sandflies. She must have been bitten by an infected sandfly in either Spain or Crete in the summer of 2009. So we now know that her HLH 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
PS The links for the Bubby videos shown at the service are:-