Leeds family’s hope of a cure for Connor

Jamie Strachan, with his son Connor, seven, who is the latest to suffer from the rare Waardenburg Syndrome. Picture Tony Johnson

Jamie Strachan, with his son Connor, seven, who is the latest to suffer from the rare Waardenburg Syndrome. Picture Tony Johnson

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A family blighted by a rare condition which causes progressive hearing loss have spoken of their hope a cure is found in their young son’s lifetime.

Connor Strachan, seven, is the latest family member to show signs of Waardenburg Syndrome, a hereditary condition which already affects his dad and grandma.

The youngster will gradually lose his hearing as he gets older until eventually it disappears altogether.

Waardenburg Syndrome is thought to affect one in 40,000 people and the audiology consultant who diagnosed Connor’s dad Jamie, 37, said it was only the second case he had seen in his career.

Jamie, of Rothwell, said: “I have had problems with hearing since about nine and I was fitted for hearing aids two years ago.

“My mum has very significant hearing loss now - she’s 65. But she hasn’t lost her hearing completely, so I should have another 30 years left before it goes completely.

“And Connor should have another 50 years.

“It’s a condition that’s obviously affecting us both past, present and future.

“He knows that it runs in the family and so he will start to lose his hearing. But we have kept it fairly light and simple for him at the moment.”

Jamie has recently begun work as a fundraiser for the UK charity Action on Hearing Loss, which supports pioneering biomedical research into finding a cure for hearing loss.

He said: “It’s fantastic to work for something that affects me and my family personally.

“They are aiming to find a cure for hearing loss within a lifetime. It’s most likely too late to make a significant impact for me but if we can stop Connor getting to the point where mine’s got or mum’s, that definitely is a cause that I’m positive about fighting for.”

Connor, who attends Carlton Primary School, also did his bit to help boost that cause recently by holding a sponsored silence for the charity.

He said: “I want to help people like Daddy and Grandma who don’t hear very well, or can’t hear at all, because not hearing anything isn’t very nice - but that’s what it’s like for people who are deaf every day. The first hour of being quiet was easy, but the last hour was really hard, I kept forgetting that I wasn’t supposed to talk and nearly did. It was fun writing messages to Mummy and Daddy, especially as I could call daddy names and he couldn’t stop me because I was writing them down instead of saying them.”

To sponsor Connor visit www.justgiving.com/Connor-Strachan and for more information on the charity visit actiononhearingloss.org.uk/get-involved.

Anyone interested in fundraising for Action on Hearing Loss can email Jamie.Strachan@hearingloss.org.uk.

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