Well, here I am with some amazing friends and family( I'm the short one with red hair!!) getting ready to take part in my very first charity event here in Ireland to raise funds for the Fighting Blindness.ie. It was an amazing but extremely tough challenge in the Glendalough Valley in the mountains in Co. Wicklow, especially as it was my first time partaking in such an event. Admittedly, I'm so delighted with myself for completing it and not even the sore legs can take the smile off my face. It was also a very important event for me personally, as…
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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…
Tuesday, 28 October 2014 00:00
Tales of an Usher Syndrome Partner - Brian's Story
Written by Brian Day
The Beginning As anyone who suffers with Ushers will know it is a trying disease which has a profound effect on not only the sufferer but those around them. All too often this is the frightened parents coping with the prospect of watching the child they love struggling to cope with a world that doesn’t really know or understand their illness. It is the children who have to realise that their Mum or Dad are “different” and can’t see them grow up or hear their words. There is one group however that very few people mention or consider and…
Over a year ago Dan, my son phoned to say he was going out with Molly, he then explained that she has Usher Syndrome. I had never heard of Usher Syndrome so decided to look it up and learn what it was. Looking back to that moment the information the sites give you do not even come close to you knowing what life is like for someone with this condition. Then Dan told us that Molly had a guide dog we thought wow this young lady is having to take on so much at such a young age (of course we…
My lovely son Jack has usher type 2. Way back when he was small we were concerned about his hearing. He seemed to fail all the hearing tests but the health visitors didn't action anything. it wasn't until we moved to Germany at we finally got a diagnosis that Jack had a severe hearing loss and needed 2 hearing aids.Jack coped really well with aids and we were fortunate that he had had enough residual hearing to achieve perfect speech. even now, if you could not see his aids you would not realise he is deaf - the reality though…
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