As you may know I have committed to running a marathon to help raise money for some dear friends, Kelly and Jason Carter. Last July they lost their twenty one month old daughter, Esme, to a pernicious but little know disease called Haemophagocytic lymphohistiocytosis (HLH). Esme was diagnosed and treated at Great Ormond Street Hospital, enduring three months of harrowing chemo therapy and drug treatment, culminating in a bone marrow transplant. Tragically the treatment wasn't successful and on the 15^th July 2010 Esme passed away, with her Mum and Dad holding her hand and reading her favourite book.

 

Training for a marathon is hard work. Late nights, Sunday’s written off, sore feet. So when my motivation is on the wane (which it is regularly!) I know that all I have to do is to think about what my friends have been through, think of Esme’s smile, and realise that my knees aren’t really so sore after all. There are over 60 of us running in September and although it will be tough; relatively speaking we have it easy.

 

HLH is a relatively obscure disease and unfortunately most people who have heard of it have been touched by it personally in some way. It 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.

  

As a team we are running in the Farnham Pilgrim Marathon on Sunday the 18th September, which would have been Esme's third birthday.

 

So this is where you come in. Please sponsor me so that we can help other kids with HLH, so that they don’t suffer in the same way Esme did.

 

Anything you can give would be greatly appreciated.

Thanks, 



Gav