THE FAMILY of a little boy with a rare genetic condition is taking on a gruelling challenge to raise awareness of his struggle.
Three-year-old Toby Barker has Smith-Magenis Syndrome (SMS), a condition which is so unusual only 600 people in the world have been officially diagnosed with it and fewer than 100 in the UK.
SMS slows mental and physical development and can affect the facial features as well as causing sleep disturbances and behavioural problems such as aggression and mood swings.
Toby’s health visitor first raised concerns about his rate of development at eight months, but he was not formally diagnosed with SMS until he was 18 months old.
The condition has already had a dramatic effect on his life including delayed speech and physical movement.
Dad Evan, an aircraft technician for the RAF at Shawbury, said: “Toby wasn’t doing what a normal child would.
“He wouldn’t sit up and couldn’t crawl.
“Even now, he’s only just about walking but he still can’t talk and might not until he’s five.
“He still manages to make lots of noise though.”
Toby enjoys regular trips to St Mary’s Playgroup in Ruabon and he loves going to Clwyd Special Riding School, which his parents Evan and Clare believe has done wonders for him.
The couple are also glad Toby can go to mainstream school when he is older although he will need extra assistance to help him learn.
Evan added: “When Toby was first diagnosed we’d never even heard of the syndrome so we did what all families probably do and went straight on Google.
“But you only see the worst case scenario stuff on there so we were quite worried at first.”
But now the Barkers, of Cinders Lane, near Ruabon, are members of the Smith-Magenis Syndrome Foundation, a small UK charity, which has helped them learn about the condition and how to help Toby and get the support they need.
And, along with more than 15 other families living with SMS, they are taking part in a teddy bear relay around the UK to raise awareness of this life-changing condition and cash for the foundation.
On Thursday Evan will travel to Falkirk to collect the travelling teddy from the family on the previous leg and from there he will go on to Ben Nevis to begin the mighty Three Peaks Challenge along with Toby’s nine-year-old brother Danny.
And Toby’s mum Clare, a hairdresser, will pick up the cuddly ‘baton’ at Snowdon before pushing herself to the limits on June 26 with a 10km run from the family home to Eastwick Nurseries, near Overton.
Evan said: “We just hope the challenge will convince people to support the foundation because they’ve helped us so much.
“It’s hard looking after Toby but he’s a really happy child, very bright, sociable and popular.
“There’s certainly never a dull moment and we wouldn’t change him for the world.”
To support the Barker family by making a donation to the Smith-Magenis Foundation go to www.smith-magenis.co.uk.
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