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.
Do you want alerts delivered straight to your phone via our WhatsApp service? Text NEWS or SPORT or NEWS AND SPORT, depending on which services you want, and your full name to 07767 417704. Save our number into your phone’s contacts as Oxford Mail WhatsApp and ensure you have WhatsApp installed.
11:20am Monday 28th July 2014
What do you think? We welcome letters from our readers on a wide variety of subjects and you can send us a letter through the blue headline above.
Our top stories
8:55am Saturday 4th July 2015
HELEN and Douglas House founder Sister Frances Dominica has been told not to return to the hospices following allegations of historic sexual abuse, it was confirmed today.
8:30am Saturday 4th July 2015
THERE are fears the £75m overhaul of Oxford Railway station may not take place for almost a decade.
8:31am Saturday 4th July 2015
TWO men died last night after the microlight they were flying in crashed at Enstone airfield.
9:30am Saturday 4th July 2015
Darryl Eales says the only big regret of his first year in charge at Oxford United was the takeover was not completed sooner.
9:15am Saturday 4th July 2015
A MAN has been charged with a conspiracy to kidnap and rob in Oxford, Thames Valley Police has said.
9:00am Saturday 4th July 2015
AS AMERICANS celebrate the Fourth of July today, tourism staff vowed to work hard to keep the US dollar flowing into Oxfordshire.