Dad’s peaks bid to help ill daughter

Paul, Svetlana and Sophia Wilson         Picture: OX69416 Andrew Walmsley

Paul, Svetlana and Sophia Wilson Picture: OX69416 Andrew Walmsley Buy this photo

First published in News Oxford Mail: Photograph of the Author by , Reporter covering Abingdon and Wantage, South Oxford and Kennington. Call me on 01865 425431

SOPHIA Wilson is a very special six-year-old girl.

She has a genetic condition shared by only 54 other people in the UK, called Smith-Magenis syndrome (SMS).

It means she produces melatonin, the sleep chemical, during the day instead of at night, and the effects are life-altering.

One of them is her “meltdown” temper tantrums, where she smashes glass and pulls hair.

Her school, St Nicholas, in Abingdon, is finding it increasingly difficult to cope with her abnormal sleep patterns and behaviour.

But her dad, Paul, has a plan.

He and Sophia’s Ukrainian-born mother, Svetlana, want to buy her a special padded room where she can let off steam without putting herself or anyone else at risk.

To raise the £5,000 to buy the “safe space”, and raise awareness for the little-known syndrome, Mr Wilson is taking on a steep sponsored challenge.

This weekend he will climb the three highest mountains in England, Scotland and Wales – Scafell Pike, Ben Nevis and Snowdon – in three days.

Mr Wilson, 42, a researcher at Milton Park’s Infineum, said: “People think her meltdowns are like a toddler having a tantrum but it’s nothing like that.

“She’ll bang her head against the wall, pull hair out, bite, scratch, kick and break glass, and she has no idea she is doing it.

“There is no trigger, it will take two people to hold her down and they can last two or three hours.”

When Sophia was born she spent seven days in intensive care and could be fed only through a tube.

The family, who live in Vineyard, Abingdon, started to notice at about 12 months she was not developing the same way as her friends.

On a trip to the Ukraine to visit Mrs Wilson’s parents she was taken ill with pneumonia and ended up on life-support.

It took eight weeks to nurse her back to health.

Doctors realised there was something more fundamentally wrong with Sophia, but were stumped.

She was hospitalised four more times over Christmas that year with pneumonia. Then a geneticist who had tested Sophia’s blood diagnosed her with SMS.

As well as the meltdowns, Sophia is also highly susceptible to ear and respiratory infections, and has been on antibiotics almost constantly since she was born.

SMS is also linked to learning difficulties, delayed speech and facial characteristics including a short, flat head and a chin that becomes prominent with age.

There is no cure for the disease. Melatonin can be taken in liquid or more powerful and effective tablet form, but Sophia refuses to swallow pills.

As she has grown she has contracted fewer infections, but her sleep disturbance is getting worse.

Mr Wilson will travel to Snowdonia tonight to begin his Three Peaks challenge.

 

 

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11:20am Monday 28th July 2014

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