When Lisa Halley was told by a doctor two months before her 21st birthday that she had a rare genetic disorder that would one day result in her losing her sight completely, she thought he had the wrong person.
But it turned out the Abertay graduate had Usher syndrome – a rare inherited condition that affects hearing and sight – and there is no cure.
Lisa, 34, who was born deaf, will never forget the day she was given the devastating diagnosis.
“I went to my appointment at the eye clinic at Ninewells Hospital,” she says.
“My BSL interpreter and my mum came with me.
“The doctor asked me a couple questions. The first was ‘can you see in the dark?’
“I was like, ‘really who can see in the dark? What a stupid question’.
“I said as a child I was always scared of the dark as are most kids.
“He then asked how my vision was and I said it was fine.
“He then went on to say: ‘So it’s highly likely you have a condition called Usher syndrome’.
“And what he said next I remember like it was yesterday.
“’Usher’s is a rare genetic condition which comes from your parents.
“‘It is a rare form of deaf blindness. You will lose your sight completely and there is no cure.
“I just sat there completely numb. I honestly thought he had the wrong person.”
Since then, Lisa has overcome many barriers with a determination not to let her disability hold her back.
She has developed a special partnership with her dual guide dog Jumble which has enabled her to graduate from university.
It has also seen her embark on a number of fundraising challenges.
How does Usher syndrome affect Lisa?
Usher syndrome is so rare it only affects around four to 17 in 100,000 people worldwide.
The genetic disease causes deafness and an eye disease called retinitis pigmentosa (RP).
As a result, Lisa has lost her sight completely in her left eye and only has a pinpoint central vision left in her right eye.
And while she has two cochlear implants which give her some hearing, Lisa is still profoundly deaf.
Being diagnosed with Usher syndrome
When Lisa was 16 years old she underwent hearing and blood tests.
At that time she was told the results were inconclusive.
It wasn’t until she was sent a hospital appointment to attend Ninewells at the age of 20Â – that a doctor informed her she had Usher syndrome.
“When I got home I sat on the stairs in the hallway and just felt frozen inside.”
Lisa was told to contact the DVLA to inform them about her diagnosis and have an eye test done.
“I thought I would still be able to drive as my sight was fine.
“But they said I couldn’t drive anymore.
“That broke me more than my diagnosis as my car was my independence.”
Lisa’s parents decided to get a second opinion.
In 2014 they took her to Moorefields Eye Hospital to meet a professor who confirmed the diagnosis and explained the condition to them.
Lisa taught herself how to lip read
Although Lisa was born deaf, she wasn’t diagnosed until she was two-and-a-half.
She taught herself how to lip read and learned sign language.
Her parents were advised to send Lisa to mainstream schools so she attended St Joseph’s Primary and then St John’s High School.
But she found school very difficult.
“While I did make friends I was bullied a lot. My speech was not great so I was sadly an easy target.
“I did lip read but when the teacher turned their back to write on the board, I couldn’t hear what was being said so it was hard at times.”
Facing barriers in further education
After high school, Lisa went on to Dundee College to study childcare. She had always wanted to be a teacher.
Yet despite passing the exams, she was told that due to being deaf she could be a ‘health and safety risk’ working with children.
So after graduating she decided instead to study an HNC in Admin and IT and an HNC in events management at the college.
Meeting Jumble was life-changing for Dundee’s Lisa
Meeting guide dog Jumble proved to be a turning point for Lisa.
The golden retriever cross-lab came into her life in February 2016.
And Lisa says she now can’t imagine life without her ‘best friend’.
“It was an instant match,” Lisa explains.
“She went on to do hearing dog training as she was going to be a dual guide dog.
“As I talk about Jumble the biggest smile hits my face. Our bond is so special.
“In my darkest time I never knew the light at the end of the tunnel would be in the shape of a dog.
“Jumble has changed my life completely.”
‘Jumble has saved my life’
Lisa says Jumble has saved her life many times.
“One time we were at a crossing and the green man went. I gave the command cross and we both stepped off the kerb.
“But Jumble suddenly pulled me back onto the pavement.
“This car then came speeding past through a red light.
“If Jumble had not have pulled me back I would have been in the middle of the road. She saved my life.
“She has also got me through some really dark times.”
Embarking on crazy adventures
Lisa and Jumble’s eight-year partnership has enabled Lisa to study and graduate with an honours degree in psychology from Abertay University.
This is despite her being told a few years earlier that ‘university was not a place for people like her, people with disabilities’.
Having Jumble has also given Lisa the confidence to take part in various fundraising challenges over the years.
These include trekking through the Grand Canyon and skydiving.
Last year she became the first deafblind person to scale a 1,200ft skyscraper in New York.
And last month she took part in the 5k Supernova Forth Road Bridge walk.
“I love doing these crazy challenges. So far I have raised over £15,000 for Guide Dogs and other charities which I am so proud of.”
Family support
Lisa is very grateful for her parents Gaynor and Norrie, late grandparents and friends who have all supported her.
“My parents are absolutely amazing.
“They believed in me when I didn’t believe in myself and have supported me through everything.
“I am so lucky and thankful for the family and friends I have around me.”
‘What doesn’t kill you makes you stronger’
Today Lisa works as a speaker and events co-ordinator for Guide Dogs Scotland.
She says if it wasn’t for the charity’s support and having Jumble by her side, she wouldn’t have achieved what she has.
While Jumble retired as her guide dog last year, she has stayed with Lisa at her home in Dundee.
Lisa is currently on the waiting list for another guide dog.
She says: “They say what doesn’t kill you make you stronger and it is really true.
“There has been times when I have felt I can’t do this anymore.
“But Jumble, my parents and friends around me have kept me going.”
She adds: “My Usher’s does not defy who I am and it doesn’t stop me.
“It just makes me more determined to show I can.”
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