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Sunday, 26 October 2014 01:00

Diagnosis: Usher Syndrome

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“Jillian, can you see in the dark?” “Oh.  Are you supposed to?” This was my response to my eye doctor at a routine checkup in high school.  It was the summer, I just turned 17 and was going in grade 11.  My older sister Michelle had complained to our eye doctor that she was finding night time driving a challenge and was wondering why.  Which prompted his question to me when it was my turn. I don’t remember anything more from that eye appointment.  I do remember hearing Usher Syndrome mentioned, night blindness, sight loss…but at 17, I didn’t care.…
Friday, 24 October 2014 01:00

Hi "I am Claire"

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Hi I'm Claire Cooper and I have Usher Syndrome type 2, I've been partially deaf since birth with 2 digital hearing aids but never considered myself deaf as I've always been oral and never needed BSL. I had help where needed throughout school and college.    When I left college I began a career in the hospitality industry working in bars and clubs I was living a normal teenage life. But then when I hit 20 I began to notice the spotlights at work were becoming an issue among many other things like bumping into lampposts and falling off curbs…
Friday, 24 October 2014 01:00

Me, My Wife Claire and Usher Syndrome

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When my wife and I discovered that she had Usher Syndrome, my first thoughts were confusion, what was Usher Syndrome, what does it mean and why has she got it? It felt so cruel hearing all this that we both broke down neither of us knew what to say or do, I just knew I had to be there for her and be strong for her.    Together we started the long journey to discover all we could with numerous Opthamologist and Gentics appointments, sometimes there was so much to take in and we would come away heartbroken.    I…
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I've visited Boyne Hill Infant and Nursery School before and was delighted to return to talk to the children about Frog, Froggy and Froggit my first children's book, tackling bullying. I have been the victim of bullying in the past, simply because I'm different, I'm deafblind but one of my brothers was bullied because of the colour of his hair. It seems anything different can result in bullying and it's very painful and upsetting. My book attempts to demonstrate to little ones that being different is ok and that we all belong. The children were very positive and engaging and…
Wednesday, 22 October 2014 01:00

My Usher Journey to date, in short!

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Valentines Day 1996 was the day everything really changed. A very lovely man with the kindest face and sensitive nature had sat on the bed and told us our beautiful daughter had sensorineural hearing loss, it was looking like a severe hearing loss and she'd need hearing aids all her life - I remember feeling all hot and sweaty and thinking I had to be dreaming and a nightmare at that. I remember Andy saying "it'll be alright" I was almost angry with him, this is not a cut knee, this is life changing and that was an understatement. I…
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