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Thursday, 13 November 2014 00:00

Lets Talk Usher

I'm Jo from Newcastle, I'm 40 years old and I was born profoundly deaf.  I had my 'eyes' and I used them for lipreading, scanning the world around me...  & being deaf was just who I was. We, as deaf people, treasure our eyes so it was absolutely heartbreaking to discover I had Usher Syndrome.  I became registered blind in my 20s and looking back over my childhood/growing up - it's obvious I had Usher - I put 'linking a friends arm' down to the fact that I was lipreading and was a little clumsy!

It takes a huge amount of courage living life as a deafblind person and my motto is 'one day at a time' and never to put myself in situations that make me feel uncomfortable.  Instead I focus on all those things I do enjoy - chatting and laughing with those close to me and long walks in the countryside while my guide dog, Matt, runs free.

Recently I had bilateral cochlea implants (http://youtu.be/IyDdVJ81Ixs) which were life changing and the youtube video of the 'switch on' went viral - it was heartwarming how people across the globe admitted to taking their senses for granted.   Like the Watt family, it has always been a mission of mine to raise awareness and 'talk' about it.  20 years ago, Usher felt like a dirty word and how wrong I was. It's because I have Usher and I'm deafblind that I have such a positive attitude ... nothing is to stop the younger generation of having the careers of their dreams and reaching for the stars.  Life is truly how you make it.

A smile goes a long way and it touches my heart every time I see the beautiful and inspiring Molly Watt smile... and the rest of the world smile with her! 

The more awareness of Usher Syndrome we raise, together - along with our families & loved ones, we are one step closer to the mission of The Molly Watt Trust

Thursday, 30 October 2014 00:00

Molly and Me

Molly and Me

When Dan first told us he had a girlfriend I had the usual questions where’s she from, how old, where did you meet etc. He answered all of these and more as he explained to us how Molly was deaf blind and had a guide dog Unis. He explained she had a condition called Ushers something I had never heard of.

I was excited to meet her but also wasn’t sure what to expect as it’s not something I had come across before. I wandered whether she would understand me, see me and vice versa. How would she cope in our environment, would she need any extra help? I decided to look up the condition online to find out exactly what Ushers was. I found lots of information about the genetic condition and how it can change how the person needs to communicate, access information etc. I was left wondering how someone so young was coping with something so big.

When I first met Molly she came without Uni. Any worries I had had about being able to communicate were pushed aside as soon as we meet. My first impression was how pretty, smart and funny Molly was and was most amazed by how she could put up with my brother!! Molly is just a normal girl who was excited about meeting her boyfriend’s family.  I soon saw that just because Molly has Ushers doesn’t mean she was going to let it stop her. She was willing to answer any questions we had and wants to educate and eradicate any preconceptions people may have.

Meeting Uni was also an experience she is the most bouncy, friendly and funny dog I’ve met. Yet also the cleverest, she never fails to amaze me with all the help and assistance she gives Molly. Her focus is always Molly’s safety and helping to guide her through her day.

Getting to know Molly this past year and a half has been a truly lovely experience. I have learnt so much about a condition I knew nothing about. I’ve also seen the struggles she face’s at night, when it’s too bright in the day time and how having lots of people around can be difficult. I have also learnt a lot about determination and what this can achieve. Yes Molly is deaf and blind but she is just like you and me. We have bonded over Breaking Bad, she enjoys socialising with friends and listening to music. Things we all take for granted. Yet I’ve also been disgusted by the prejudice Molly has had to face over the last year but equally amazed by how she has dealt with those situations. How she has helped others who struggle with the same condition by showing them how life is for living and nothing should hold you back.

I truly believe Molly is going to make a fantastic teacher and has certainly taught me loads. But mostly I love how she makes Dan happy. Also I love how Uni can make a room smile whenever she walks in tail wagging. They have both defiantly brought a lot in to our lives.

Jess. X

 

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