One of my closest friends was pregnant with her second child the same time I was pregnant with the twins. Her daughter Chloe was born just 5 days after Amélie and Harry and is my god-daughter.

At 23 months, Chloe was diagnosed with the neuro-genetic condition NF1. Although hardly anyone has heard of it, Neurofibromatosis (NF) is one of the world’s most common neuro-genetic conditions. It affects 1 in every 2,500 people worldwide – about 25,000 in the UK.

NF1 is a genetic disorder of nerve tissue and can occur spontaneously in any family. There is no cure and it is not treatable. The severity and effects of NF vary significantly from one person to another, but can include benign tumours, disfigurements, mobility problems, sight problems, bone deformities, social skill problems (links to autism) and learning difficulties. Whilst some individuals with NF may live a life without health problems, many will have multiple medical, physical and psychological complications and will need frequent and ongoing medical and health assessments, reviews and support.

My god-daughter Chloe is a strong and happy child, who is helped by her family to live life to the full. However at age 7, she already has to cope daily with the limitations that result from chronic pain, extreme fatigue, coordination and mobility difficulties and recognising that she can't do many of the simple things that other children take for granted.

The Childhood Tumour Trust is a charity that directly supports children affected by NF and their families. They provide practical and emotional support, vital for families learning their child has NF and trying to understand what this may mean for the future. They support opportunities for family days out for children with NF and their families and create opportunities for families to network. They also seek to raise awareness of NF and fund research into these conditions. Awareness-raising can make a massive difference to the lives of children growing up with these conditions.

If you are able to help us support this valuable charity, then please sponsor us.  The run is in 2 weeks - so please don't delay!!

Thanks,

Karen, Amélie and Harry xxx

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