I was lucky to meet Mark, Julia, Bella and Jack Dunning a few years ago in Boston as a result of my mum finding the Usher Coalition online.
Networking has been a godsend to my family and I as we have managed to reach out to others living with usher syndrome just like myself and found information and support which appears to be lacking throughout the world.
Mark suggested quite a while back that I might be invited to speak at the above event, naturally I was very flattered and excited to be considered for such an occasion, the formal invitation arrived soon after.
This year has really been almost unbelievable to me.
I turned a corner, the torment of previous years had eroded thanks to my parents, staff and friends at Strodes College and my dear counsellor Norma.
I made my most recent video which went viral, I was very surprised.
I was made an Ambassador for Sense, I have spoken in several large hospitals here in the UK, lots of schools and youth clubs and most recently The House of Commons in London and now Harvard Medical School. I’ve appeared on radio and television and my message is always about positivity and raising awareness of usher syndrome as awareness leads to support and then success.
I’m not going to blog about the awesome presentations about research as it was very in depth and I’d hate to get it wrong. That said hearing about all the usher specific research was uplifting and gives us all hope for the future.
I have faith in science and in the meantime life goes on and I believe with determination and the right support people with usher syndrome can do great things, it’s never going to be easy but I refuse for this condition to rob me of all my dreams. Whilst there is such excellent technology to allow access to sound and text our world is accessible and as I’ve said before “My world might be tiny but my determination spreads the world”.
At what became known as #USH2014 I met so many people I know from networking and their families and new people, I was shocked that some had heard of me – shows how the usher community from around the world are all looking for each other. As Mark said, you don’t just find another person living with usher syndrome around the block!
There were people from 13 countries at the conference it was an amazing coming together.
I was so pleased to see Bella Dunning, she’s going to be very tall like her Dad, it was like old friends meeting, we had both grown up, Bella both in age and height, me just in age! (Thanks Dad). We had lots of catching up to do.
Bella has usher type 1b and cochlear implants and I have usher type 2a and hearing aids, we both communicate orally but Bella can communicate with ASL and I, a little BSL – I thought how glad I am we both are oral so we could have a private girly chat but had she and I signed we would have been speaking very different languages as BSL and ASL are very different.
Communication really is a huge issue for people with usher syndrome and I have to agree with one of the presenters who felt that if possible all with usher, children particularly, should have speech as a first language and signing as a back up, completely makes sense to me.
Bella will always be a special friend as usher syndrome brought us together from all the way across the pond, that’s pretty cool.
I enjoyed listening to the Usher Ambassadors each with a different story but on the whole lots of positivity which makes a huge difference as somebody else said “did you know usher syndrome is not a killer.”
My part in #USH2014 was to be on The Family Panel along with 4 others – it was a sort of questions and answers situation and we were each able to speak of our personal usher issues, there was passion, enthusiasm, humour, honesty and laughter it was such a pleasure to be invited to be a part of such an amazing event with an audience of others with usher syndrome, their families, scientists, researchers and specialists.
After the talking, we all headed off to the BBQ where I was approached by so many people who congratulated me on what I had said and the things I do, I cannot tell you how good it feels to be told by a parent of a young child with usher that I inspire them, it makes me want to do more for the community I am a part of.
I can only describe it as very, very special.
I have made more friends with usher all over the world and have contact details for some professionals too, I should add they were so approachable which made a huge difference, just being able to chat to specialists from all around the world, big thanks to all at The Usher Coalition.
I believe next year the Conference will be in New Orleans, how I’d love to be there but I’ll be a very poor student just finishing my first year of university all things going to plan, but hey, who knows, Mum does the Lottery!
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