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I'm deaf and going blind but I'll run 10k race with my mum; COURAGE LISA, 23, ON HER BATTLE WITH USHER SYNDROME.


Despite suffering yet another devastating personal blow, Lisa is determined to battle on and wants to help raise funds for charity LISA Halley spent her whole life coping with being deaf, so to be told she was losing her sight as well came as a devastating blow.

The 23-year-old has Usher syndrome, a rare genetic disorder that results in blindness and hearing loss.

But despite having no peripheral vision and suffering from night blindness, Lisa and mum Gaynor have signed up to run the Bupa Great Women's 10k in Glasgow next month for two charities close to their hearts.

Lisa knows it will be a challenge but, with the family having overcome a series of obstacles throughout her life, she can't wait to take part.

She said: "When I got told I had Usher syndrome, my mum and I were confused as neither of us had heard of it. The only Usher I'd heard of was the singer.

"The doctor told me there was no cure and said it was only the eighth case he'd seen.

"When I asked for more information, he told me to Google it.

"I felt very scared, as did my parents, as we had no help or information.

"I don't mind being deaf, it's who I am.

I've been deaf my whole life so I'm used to it but being told I will lose my sight as well was so scary.

"My eyes are my ears, as I lip read. So to lose that is horrible.

"I had to tell the DVLA, who sent me a letter saying I could never drive again. That really hurt, as driving gave me that bit of freedom."

Lisa's mum Gaynor, dad Norrie and big sister Nichola had all battled hard to ensure Lisa enjoyed a normal upbringing, sending her to the local mainstream schools - St Joseph's Primary and St John's High in Dundee.

"I was diagnosed as being deaf at two and a half," Lisa said. "My parents wanted me to be able to choose between a hearing and a deaf world.

"One teacher told my parents I wouldn't last in a mainstream high school but not only did I prove him wrong and finish high school, I became deputy head girl in sixth year as well.

"But I also got bullied a lot at school because of my deafness and my voice, which hurt a lot.

"It wasn't easy making friends. I could never go up to anyone, as I was scared they'd laugh at my voice or ignore me.

"Because I was the only deaf pupil, some people didn't really understand deafness so they didn't know what to say or do with me.

"But my mum and dad protected me a lot from negative comments and things like that.

"I wouldn't be as strong as I am now if it wasn't for them." One of Lisa's nominated charities for the 10k race, which takes place on Sunday, May 11, is Deafblind Scotland, after the charity helped her come to terms with the Usher syndrome diagnosis.

"I was put in touch with John Whitfield, who works for Deafblind Scotland and has Usher syndrome himself," Lisa said.

"He was so helpful, and gave us so much information, that it helped build my confidence back up. Last year, I abseiled off the Forth Rail Bridge and raised PS300 for them.

"In November, I hosted a coffee morning that raised PS470 and we auctioned off a signed Dundee top, which raised PS150." Lisa will also be running in memory of her grandfather, Michael Robertson, who died five years ago from myeloma - a cancer of plasma cells in the bone marrow.

Some of the money she raises will be going to the charity Myeloma UK.

"He was my hero," said Lisa. "He was the nicest man you could ever meet.

"I was very close to my grandparents. My grandad got me into musicals and theatre, and we would always go together.

"I started doing drama because d build lp hich it of him. He said it would my confidence and help improve my speech, which did. He told me to follow my dreams and my heart, no matter what people said.

"When he got diagnosed with cancer, he never let it bring him down.

"He fought every battle he had and always cared about other people before thinking about himself."

Lisa and Gaynor, 51, are in training for the race, in which more than 10,000 women will run through the south of Glasgow, taking in Pollok Park and finishing next to Bellahouston Park.

ll h k Organiser Andy Mitchelmore said: "This will be the 22nd staging of the event.

"Its enduring popularity is thanks to the thousands of women who take part every year and make it such a special and welcoming event."

Lisa said: "I will be running with my mum beside me.

"She doesn't really like running, but she is happy to do it in memory of her dad. I can see straigh people are them, so I'l "ll straight ahead fine but if beside me I won't see I'll have mum to help. "We will start and finish together and there's no person I'd rather do this with.

"I just want to raise money and awareness of two charities that are really close to my heart.

"And I want to help to support other families who may be going through the same thing so that they don't feel so alone.

"I may not know what's going to happen in the future but I know I'm going to live life to the fullest."

To enter the run go to

To enter the Bupa Great Women's 10k visit To support Lisa visit eyes are my ears, as I lip read. So to lose that is horrible LISA HALLEY


FUNDRAISER Lisa abseiled down the Forth Rail Bridge to help Deafblind Scotland

INSPIRATION Lisa with her beloved late grandad Michael Robertson

CHALLENGE Lisa and mum Gaynor's run will raise cash for Myeloma UK and Deafblind Scotland
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Publication:Daily Record (Glasgow, Scotland)
Geographic Code:4EUUK
Date:Apr 11, 2014
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