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 etc, and soon became known as “Clumsy Claire”.
At 21 I got married and only a month later we got the answer as to why I had been so clumsy…. Usher Syndrome
Well that took the wind out of my sails and really knocked our honeymoon period into a downward spiral, I couldn’t see the light So became depressed and questioned my marriage as I didn’t want my husband to become a carer, it felt like I had been given this life sentence and wondered what I’d done so wrong to deserve this. I learnt the prognoses and thought my life was over.
My husband was amazing he said he would stick by me no matter what, that he would always be there.
My parents and family took it hard with self blame as its a genetic condition but they too said they would support me through everything I did.
I also found Molly and Jane Watt before MWT was born. They were the first people I discovered with a link to Usher, when I discovered my diagnoses I’d never heard of it and felt alone so to find these amazing people really showed me the light, even though Molly is younger than me she was so positive and was achieving so much, her mum is such a fighter too helping so many with Usher Syndrome overcome obstacles if something isn’t right then Jane is there without question.
These people are amazing and have helped me through so much they don’t even realise, without them I don’t think I’d be where I am today.
Which is a Mother to a Beautiful 3 year old girl, we decided to move our life plans forward so I could see my child grow up while I still have sight. I’m also a Guide Dog owner, my dog Minnie has been another little life changer and has firmly put our lives back on track.
I also enrolled myself into Open University to start studying again which without Jane and Molly’s help I don’t think I would have ever considered again.
Usher Syndrome may have been the worse news I’ve ever had to hear and also the biggest life changer but it’s made me who I am today thanks to the amazing people around me I’ve become a fighter and a person who has Usher and proud!
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