Just before Christmas in 2018 our beautiful daughter Nora, aged just three, became suddenly and life-threateningly ill, with an unknown illness. In the space of just six weeks we watched, utterly helpless, as Nora lost the ability to stand, sit unaided, walk, raise her arms, get in or out of bed, use her crayons, and had started to lose the ability to speak and to swallow. Sleeping on the floor next to her hospital bed in Bristol, Will contacted our priest, to administer the last rites.

At the eleventh hour, we got a miracle. Nora was diagnosed with a rare autoimmune condition called Juvenile Dermatomyositis, and began a regime of steroids and chemotherapy drugs that saved her life.

Even with the correct diagnosis and treatment, Nora faces a lifetime of uncertainty, medication, hospital appointments, pain, side effects and potential disability. JDM is incurable and very unpredictable. There are few lonelier or more difficult paths to tread as a child, a parent or a family.

Yet as is so often the case, where there is despair there is also always hope. Nora’s fortitude and resilience is incredible, the expertise and care from her medical team is exceptional, the support from family, friends, otherJDM parents and from colleagues at work is given without question whenever it is needed.

So as I lace up my marathon running trainers for the very last time, I’m running London for a tiny but utterly fabulous charity who support families with Nora’s condition. Myositis UK provide help and advice when life feels overwhelming and desperate, they campaign for better understanding and treatments, and they fund medical research that might one day find a cure.

So whatever you can spare to support me as I drag my overweight, unfit, middle aged body around the 26.2 miles on the day (and the 400 miles of training before then!) - will make a real difference to other families just like ours.

Thank you, and with biggest love from Ems, Will, Harry and Nora xx ❤️

The small print…

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