A MAN from Ruabon is to take part in a gruelling three peaks challenge to raise money for research into a rare genetic disorder.

Evan Barker is one of 19 fathers of youngsters suffering from Smith-Magenis Syndrome (SMS) planning to take part in a three peaks challenge to improve awareness of the condition and raise funds for more research.

The dads are members of a WhatsApp support group for parents of children with SMS, a condition includes intellectual disability, delayed speech and language skills, sleep disturbances and behavioural problems.

The plan is to walk up Ben Nevis, Scafell Pike and Snowdon in about 30 hours - symbolising the ups and downs for families living with the syndrome which many people, including health professionals, still know little about.

Mr Barker, who has helped organise the challenge with Mick Pearson of Bognor Regis, said the condition affecting his son Toby, 10, often leaves the whole family mentally and physically exhausted. He would like to see a better understanding of SMS and also raise over £10,000 towards research which is carried out at the Cerebra Centre at Birmingham University.

Professor Christopher Oliver is leading a study with his students into the effects of SMS, the most common being behaviour and sleep patterns of persons with this syndrome.

Mr Barker, 48, who lives near Ruabon with his wife Clare, 49, sons Toby and Danny, 16, said: “The research is mainly aimed at helping families cope and to identify patterns in sleep and behaviour which we could then start working on.

"When Toby first got diagnosed, most professionals had never heard of Smith Magenis because it’s so rare – this is why we want to raise awareness.

“It’s amazing how few health professionals even know of the syndrome, but of course every single child is different, not one is the same. This ignorance creates a barrier and lack of understanding – while shopping, for instance, Toby is often just treated as a naughty person. He’s not naughty, there is a reason for it.

“There’s also the isolation – you can’t do the things that normal families do. We can’t go on holiday abroad, we can’t go to the cinema or theatre. You are kind of cocooned in your own little world. That is part of the condition. We’re going up to Scotland for a few days soon, but we won’t have a proper holiday – we’ll still be up three or four times a night and still having to deal with all the meltdowns.”

Sleep deprivation takes a heavy toll on Mr Barker, a helicopter engineer, and his wife Clare, a barber. This is typical for many parents of youngsters with this condition who are prone to bursts of sudden, irrational anger.

“People don’t realise just how full-on, how constant it is, you are on the go 24/7,” Mr Barker added. “The other week, when Toby was on half-term and I was on nights, getting in at 4am, he was getting up between four and five in the morning – and during the day I couldn’t go back to sleep. I don’t know how we coped that week.”

The Three Peaks Challenge will start on Friday August 24, with 15 dads climbing up Ben Nevis, with a further four there to support the others with refreshments and to provide transport.

As soon as they have descended Scotland’s Ben Nevis, they will be straight off to Scafell Pike in the Lake District, then back in the minibus heading for Snowdon. The plan is to complete the challenge before nightfall on Saturday.

To sponsor the event visit smith-magenis.org/get-involved/donate/