My story

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.
We have also raised a huge amount via Team Esme - see www.justgiving.com/teams/esmecarter.
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:-
Adagio for Strings – images and videos of Bubby http://www.youtube.com/watch?v=RcReYJcaNe8
You are so beautiful – images and videos of Bubby and her friends and family http://www.youtube.com/watch?v=_ovL1pkxSIU
PPS To understand more about how HLH impacts children's lives, please visit http://www.youtube.com/watch?v=IRhWUMYB4Vc Liam's experience draws many parallels with Bubby.

My gallery 8

My Team

Team photo
Running for Esme

My company

My charity

Histiocytosis Research Trust

Histiocytosis Research Trust

Charity Registration No. 1004546

The Histiocytosis Research Trust funds scientific research into uncovering the causes of Langerhan's Cell Histiocytosis and Haemophagocytic Lymphohistiocytosis as well as seeking to ensure early diagnosis, effective treatment and a cure. We also aim to support patients and their families.

Donations 380

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Our Christmas donation with love to Bubby and family. xxx

Donation by Jill Fairbrother and family on 01/01/13

£10.00

+ £2.50 Gift Aid

Donation by Jeannette Cattell on 24/12/12

£100.00

+ £25.00 Gift Aid

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To our little Bubby - we miss you more each day. From Lucas: 'We can't stop loving you'. With all our love always Mummy, Daddy, Lucas and Violet xx

Donation by jason carter on 23/12/12

£200.00

+ £50.00 Gift Aid

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Sending love to you dear Kelly and Jason

Donation by Sarah and Luke on 16/07/12

£15.00

+ £3.75 Gift Aid

From Bob and Jean Grainger in Javea

Donation by Kelly Carter on 27/04/12

£17.00

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Donation by jason carter on 09/01/12

£1,300.00

+ £325.00 Gift Aid

Donation by Louise Rowe on 01/01/12

£20.00

+ £5.00 Gift Aid

For our sweet little Bubby - we all miss you more than you will ever know. All our love Mummy, Daddy, Lucas, Nanny, and Grandad Tim xxxx

Donation by Kelly Carter on 23/12/11

£200.00

+ £50.00 Gift Aid

Sorry for delay...

Donation by miles lewis on 30/11/11

£135.00

+ £33.75 Gift Aid

Donation by David Roberts on 07/11/11

£104.80

+ £26.20 Gift Aid

Well done miki, good time. Xx

Donation by MEg and Claire on 03/11/11

£20.00

+ £5.00 Gift Aid

A worthy cause. Keep up the great work.

Donation by Craig Victor on 02/11/11

£240.00

+ £60.00 Gift Aid

Thanks for lending us your bath chair, Tristan loved splashing about in it! x

Donation by Lynsey Forrest on 30/10/11

£10.00

+ £2.50 Gift Aid

Donation by Richard Hewson on 24/10/11

£10.00

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Well done Jason!

Donation by Kit Tollner on 08/10/11

£20.00

+ £5.00 Gift Aid

Well done Dave, awesome effort. Such a beautiful little girl.

Donation by Matt Zarb on 03/10/11

£20.00

+ £5.00 Gift Aid

well done on all the fund raising

Donation by Alison M on 03/10/11

£300.00

+ £75.00 Gift Aid

Well done Dave, worthy cause! Jules

Donation by Julian Downes on 03/10/11

£30.00

+ £7.50 Gift Aid

Well done Miki, fantastic work xx

Donation by Ian & Sandra on 02/10/11

£50.00

Donation by christine on 01/10/11

Congratulations to everyone who ran, especially to Dave! Apologies for the late donation :)

Donation by Maria Edwards on 30/09/11

£20.00

+ £5.00 Gift Aid

Hey Miki - you're crazy in the coconut...great work champ! And well done to everyone involved.. xx

Donation by Liz D on 30/09/11

£20.00

+ £5.00 Gift Aid

Well done Gareth -- an excellent cause too. Amazing response!

Donation by Richard Blake on 30/09/11

£30.00

+ £7.50 Gift Aid

Well done everyone!

Donation by Jo Sathiaraj on 27/09/11

£20.00

+ £5.00 Gift Aid

Best wishes and best of luck!

Donation by Rick Wong on 27/09/11

£30.00

Donation summary

  • * Online donations$46,192.77
  • Offline donations$16,494.27
  • Text donations$0.00
  • Total raised$62,687.04
  • Gift Aid$9,556.43

* Charities pay a small fee for our service. Find out how much it is and what we do for it.