Ruabon boy finds words to tell mum: 'I love you'

Published date: 06 March 2014 |
Published by: Staff reporter
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A SIX-YEAR-OLD boy who suffers with a rare chromosomal disorder has been able to say “I love you” to his mum for the first time.

Clare Barker, 44, who lives near Ruabon, has spoken to the Leader about her young son Toby’s tear-jerking breakthrough.

Toby has Smith-Magenis Syndrome (SMS), which means part of chromosome 17 is deleted. There are about 600 confirmed cases in the world, and about 100 in the UK.

It has led to Toby experiencing developmental delays and behavioural issues and affected his hearing and his sleep.

He started walking when he was three and he’s only just started talking now – aged six.

Clare and husband Evan, who works at RAF Shawbury as a helicopter mechanic, began signing with Toby when he was about two years old but in recent months his communication has improved in leaps and bounds.

Clare, who is gearing up for the Chester half-marathon on May 18 to raise funds for research into SMS, said: “He just started picking it up, which was amazing. I’ll always remember the first word he signed to me. He was in his cot, and I was standing over him when he used the signal for ‘drink’.

“It was just what he wanted but it was huge for us. Everyone got a phone call that day.

“He has always been very affectionate but recently he started signing to tell us how he feels and when he does that he’ll mouth ‘I love you’. It’s fantastic.”

Developmentally, Toby is roughly on par with a three-year-old. His condition has no known cure but Clare is confident that research will benefit those living with SMS in the future.

She said: “Awareness raising is important. Not many people have heard of SMS and because it’s unusual it doesn’t get as much funding as other conditions – even though I suspect it’s actually under-diagnosed.

“My family has been involved in a lot of fundraising over the years.

“We’ve held garden parties and taken part in sponsored runs.

“My husband and my eldest son Danny (11) have done the Three Peaks challenge and the Wales Three Peaks challenge.

“It’s my turn now.”

Clare, a full-time carer, said Toby’s condition shapes the family life.

She said: “It does take over your life. Fortunately Toby is a healthy boy. Some people with SMS develop kidney and heart problems but he doesn’t have them.

“The main thing with Toby is his behavioural difficulties. He sometimes self-harms and can be quite violent toward members of the family, which is hard sometimes.

We are still learning to deal with that.

“On the other hand, most of the time he’s a lovely boy. He’s very friendly and he likes to cuddle. He’s very into his technology and loves playing on his iPad and he’s starting to type his name now.

“He recognises his own name and Danny’s name. It seems like something tiny but for us these steps are massive.”

Toby attends Ysgol Rhosymedre, where he enjoys getting messy while doing crafts and cooking.

Clare said: “Everybody falls for him. He’s just learned the sign for ‘cheeky’ which is very funny, because he keeps calling other people that – but he’s a cheeky chappie himself.”

Although SMS is rare – it is estimated to affect fewer than one in 25,000 people – Clare has forged links with the families of other sufferers in the area.

She keeps tabs on Gwersyllt youngster Charlie Lewis, now in his early teens, who underwent a kidney transplant in 2012, and also  on Louis Mushrow, nine, of Hawarden.

Louis made the national news last year when the Leader revealed his condition made him cry involuntarily whenever he heard stirring music.

Clare said: “We do keep in touch with each other because we understand what each other is going through.

“Our life is built around Toby’s physio, his audiology appointments and his sleep problems. That affects all of us, including Danny, because Toby will wake at strange times.

“We also have some respite a few hours a week with a group called Yourspace, which operates in Chirk. The staff there are lifesavers.”

Clare said that fundraising for the SMS Foundation UK was “keeping the family fit” and has been out pounding the pavements ahead of the run in Chester.

She said: “I’ve been training in the lanes near the house and I’m up to about nine miles now. I’m on target.

“I’ve done several races before so I’m not too nervous. But I don’t want it to be like last time when I fell over and hurt my knee. Fortunately it was close to a friend’s house so I could hobble over there. I’m looking forward to the race.”

To donate to the foundation visit fundraisers/clarebarkerrunner

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