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People (8)

Thursday, 23 October 2014 01:00

Claire Cooper

Written by

Hi my name is Claire Cooper, I'm 26 years old and I did the Tough Mudder on July 13th 2014. I have Usher syndrome (deafblind) and I raised almost £500 for the Molly Watt Trust.

Usher Syndrome is a genetic condition and for myself I am a type 2 which means I was born partially deaf and in my late teens early 20's I began losing my sight to Retinitis Pigmentosa (RP). I now have a Moderate Hearing Loss with 10 degrees of Tunnel Vision with Glare and Night blindness, this condition is progressive which means I could eventually lose my sight completely.

I am wife to Mark and Mother to a beautiful 3 year old girl and a stay at home mum, so I had to train for this event in the little spare timeI have.  My guide dog Minnie ensured I got to the gym safely but on the day of the event I was unaided but with my 'Mudder team!'.
So as you can gather this was a very big challenge and I was be very very grateful for everyone's support and your support enabled me to help a Charity very close to my heart, The Molly Watt Trust.

This Charity was set up to support people with Usher Syndrome and Molly and her mum Jane have been such an inspiration to me, they were the first people I found when I got my dreaded diagnosis they helped me through what I can only describe as the worst thing I have ever had to go through, learning what the condition is and my prognosis meant for me was mind boggling and frankly scary and these lovely people showed me it's not so bad even when I felt so very low at my future prospects.

Molly showed me that nothing can get in our way if we set our minds to it and have the correct support in place.  My dream was to achieve this mighty challenge and I did it and it has given me the confidence and desire to do lots of other things and to enjoy life.

Wednesday, 08 October 2014 01:00

Molly Watt

Written by

I am 20 years old, I'm a very creative and determined person and the proud owner of Guidedog Unis.  Life is often tough, however, it doesn't stop me doing most of the things others my age enjoy, however having Usher Syndrome does mean the things most take for granted can and are often very challenging.

Since being diagnosed it became more and more clear that few have heard of the condition that has taken my hearing and sight, let alone understand it and there began my quest to raise awareness of Usher Syndrome and to get across the message that the correct support and understanding are key to those of us living with this cruel condition.

Since diagnosis I have used my creativity to make Usher Syndrome Awareness Videos which can be seen on my website, these videos are regularly used by professionals who work with DeafBlind people and as a result of producing these videos I was nominated and won the title of Sense's Young Deafblind Person of the Year in 2010, I was the youngest ever to win that accolade back then and something that spurred me on.

Along with enjoying the usual things in life I am actively involved in charity work, I am an Ambassador for Sense, I've taken part in the Race around the Isle of Wight on board Songline With Sir Alan Rudge and his crew fundraising for RP Fighting Blindness and of course I spearhead this charity.

I've had the huge pleasure of doing presentations at The House of Commons and also at Harvard Medical School raising awareness of Usher Syndrome and Usher issues and will continue to do so as and when I can whilst studying at University.


"Usher Syndrome is just a part of me, it does not define me"

Wednesday, 08 October 2014 01:00

Alfie Mayes

Written by

Alfie came into our lives 7 years ago, and we had no idea the road we were about to walk down with him. On every twist & turn we took with him he showed us a new way to look at life and how to do things differently. He is an inspiration to us, when him and his three brothers and sister struggled to communicate using BSL instead of giving up they made up their own form of sign language which amazes me everyday that they understand what the other one is saying. He has this no fear attitude especially when it comes to roller coasters, he always wants to sits at the front with his hands in the air ready for the thrill factor.

Alfie has a very stubborn personality, he never gives in no matter how hard the problem is he will find an answer to it. He is a loveable rogue who surprises me and his dad every day and he has taught us to never take anything for granted to not to just walk through the forest but touch every leaf and plant on the way through so we never miss a thing.

Emmie Mayes

Wednesday, 08 October 2014 01:00

Diane Healey

Written by

Diane lives in Northern Ireland and has set up her own website to raise awareness of the many challenges she faces.
More details can be found at www.mylifewithrp.com

Tuesday, 07 October 2014 01:00

Jake Wilkins

Written by

Hi, I'm Jake and I'm 15 years old, I was diagnosed 2 years ago with Usher Syndrome Type 2.

I'm in year 11 at school doing my GCSE's, the school have been really good at making sure everything is accessible for me.

In July I did work experience through the school at a garage, as I want to be a mechanic, I loved being in a working environment and they must have liked me as they offered me a Saturday job. I work 8.30 to 12.30 on a Saturday and love it.

I race karts on a weekend and am a member of a club at a local track, next year (2015) I am hoping to take part in a Championship racing against adults at a different track.  As far as I'm concerned the faster the karts the better.

My mantra in life is "let's get on with it and see what happens" I'm very positive and like to take challenges head on, with the help of my mum and dad we normally come up with a solution to all problems.

Tuesday, 07 October 2014 01:00

Jack Hodgson

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Jack is an accomplished sportsman, who represents Great Britain in Judo. He is a Commonwealth Gold Medalist and European Silver Medalist and is currently pushing for selection for Rio 2016.

Jack has competed in many countries around the World and has recently returned from the World Championships in Colorado.

Jack has previously won the title of 'Young Deaf Sportsperson of the Year' as well as the Sense 'Young Deaf-Blind Person of the Year'.

Jack had the honour of carrying the Olympic Torch in 2012.

Tuesday, 07 October 2014 01:00

Martin Southam

Written by

Martin has always been interested in sport, a Leeds United football fan who enjoys trips to the gym and swimming.
Always a positive attitude to life, especially after being matched with his beloved Guidedog Kean who now helps make getting around much easier.
Martin now spends much of his time volunteering and fundraising for Guidedogs for the Blind.

Tuesday, 07 October 2014 01:00

Sarah Bailey

Written by

Hi I'm Sarah and I have Usher Syndrome.
Luckily I still have fairly good central vision and enjoy making and decorating cakes in my spare time.
As long as the lighting is right I'm very capable.
I have created lots of different cakes for family and friends over the last 3 years.
Creating and decorating cakes gives me a great sense of satisfaction and reinforces to me that whilst I struggle to do some things, I still do have some useful vision.
Aswell as bringing up 3 children with my supportive husband I run marathons and have jumped out of an aeroplane to raise money for charity.
The next thing on my list "todo list" is to get a job.


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