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Fragile X Syndrome is a genetic condition and is the most common known inherited cause of learning disabilities, affecting around 1 in 4000 males and 1 in 8000 females.
In addition, approximately 1 in 250 females and 1 in 600 males are carriers of the fragile X pre-mutation.

As well as learning disabilities, common behavioural features include short attention span, distractibility, impulsiveness, restlessness, over activity and sensory problems.

Many children and adults show autistic like features, including: avoiding eye contact, anxiety in social situations, insistence on familiar routines and hand flapping or hand biting. Although many people with fragile X relate well to others, anxiety in unfamiliar or unpredictable situations may cause them to act in this way.
Speech and language are usually delayed with continuing speech and communication problems. Some children and adults develop epilepsy.

However, strengths associated with fragile X include good imitation skills, visual learning and long term memories. People are also often described as having likable personalities, being sensitive to others' emotions and as having a good sense of humour!

One of the aims of the Fragile X Society is to provide support to families affected by fragile X, through providing information about the conditions.

My cousin Mark, and his wife Tara have three beautiful children, two boys and a girl.
The boys, Holden and Bowie, both have Fragile X, and I have seen in them many of the features described above.
In particular I can absolutely confirm the bit about likeable personalities, sensitivity to others’ emotions, and the sense of humour – their laughter is hugely infectious!

So… the challenge…
I have signed up to something called The Mongol 100.
In March I will be flying out to Mongolia, and travelling to Lake Khovsgol, which is in a remote corner of North-Western Mongolia.
It is one of 17 ancient lakes in the World, over 2 million years-old, and contains the World’s purest fresh water.
The shores are lined with ancient stands of boreal forest and packed with Wolves.
In winter, temperatures drop as low as minus 40 degrees Celsius, and the ice freezes across the lakes entire near-100-mile length to a depth of over a metre thick.
The objective is to traverse the entirety of the lake from north to south, by any means: Foot, skate or bike.
Four days on the ice, and camping at night in traditional ger camps.

This really will be a once in a lifetime experience. One I am both looking forward to, and am more than a little nervous about.

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