Marathon in memory of Camden toddler who died of rare immune disease

A group of runners have raised �65,000 to help fund research into a rare immune disease that claimed the life of a toddler.

Fifty-five people ran the Farnham Pilgrim Marathon in honour of Esme Carter - whose life was tragically cut short in July 2010, aged just 22-months, after she was diagnosed with haemophagocytic lymphohistiocytosis (HLH).

The marathon took place on Sunday, September 18, which would have been Esme’s third birthday.

Her mum Kelly Carter, 40, of Dartmouth Park Road, Dartmouth Park, said: “It was amazing; a better way to spend her birthday than sitting here thinking sad thoughts about her. It was a positive thing we could do to celebrate her life.”

Esme, or “Bubby” as her family fondly called her, was admitted to hospital in May 2010 after suffering with an unbreakable fever.

She was diagnosed with HLH and transferred to Great Ormond Street Hospital.

Esme went through 10 weeks of brutal tests and procedures including chemotherapy, steroids, and a bone marrow transplant. Tragically she died four days after the transplant from the intensity of her chemotherapy treatments.

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HLH is a rare immune disease that is treated similarly to leukaemia, but the survival rate is much lower at only 50 per cent.

“We don’t think this is acceptable and that’s why we are fundraising to evolve understanding of the disease, improve treatment and ultimately get more children better and home with their families where they belong,” said Mrs Carter.

The survival rate is low because HLH research receives very little government funding. Since their daughter’s death, Mrs Carter and her husband Jason, have been fundraising for better research.

“It broke out heart to think we lost her,” said Mrs Carter. “But the only thing we can do for any good to come of it is help other kids.”

To date the Carters have raised more than �110,000 for research. Part was donated to The Histiocytosis Association, an American HLH charity, and the rest went to The Histiocytosis Research Trust in England.

The marathon raised the largest sum of money to date and a website has been set up to collect donations.

* Visit to donate.