brian McDermott

Running for Esme

Fundraising for Histiocytosis UK
£5,488
raised
by 85 supporters
Donations cannot currently be made to this page
Participants: Esme Carter
Histiocytosis UK

Verified by JustGiving

RCN 1158789
We fund research & information support to improve the lives of patients & families

Story

I always said people who run marathons were idiots (apologies marathon runners amongst you) that it wasn’t natural to run 26 miles and that it will all end in sore feet, nipples and arthritic knees.

Well this year I am running a marathon.

Why?

Just over a year ago my friends' duaghter, Esme, who had been ill for a while with terrible fevers, was finally diagnosed with the disease Haemophagocytic lymphohistisocytosis 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, on the day before Kiernan was born 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 said 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.

Esme’s parents saw her go through unimaginable torment, and they do not want any other children or parents to suffer in the same way.

To this end they have set themselves a fundraising target of $100,000 for the charity that is leading research into this condition, and this is why I am running the marathon, this September on what would have been Esme's third birthday.

If you want to know any more about Esme’s story, the disease, or the research foundation I am running for, then more information can be found here http://www.firstgiving.com/esmecarter

You may be aware that I have spent a fair amount of time in the last few years limping and/or crutches and I am not in the best physical condition.

This is going to hurt. A lot.

Details of the race can be found below, and the “Undulating/Hilly” profile scares the pants of me!!
http://www.runnersworld.co.uk/events/viewevent.asp?sp=&v=2&EN=59570&ms=

Please dig deep, I need all your help to keep on running.

About the charity

Histiocytosis UK

Verified by JustGiving

RCN 1158789
Histiocytosis UK funds research into uncovering the causes of Histiocytic diseases. These include Langerhan's Cell Histiocytosis & Haemophagocytic Lymphohistiocytosis. Seeking early diagnosis, effective treatment and a cure as well as providing information support.

Donation summary

Total raised
£5,487.76
+ £1,249.44 Gift Aid
Online donations
£5,487.76
Offline donations
£0.00

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