This is probably too much for FB, I’ve probably, justifiably, had one too many glasses of wine, and I will most likely regret this post tomorrow, but here goes…….We found out yesterday that our beautiful baby girl Rebecca has Usher Syndrome Type 1. Usher Syndrome is a rare genetic disorder in which a child is born profoundly deaf, and begins to lose their vision around ten years of age. Rebecca will unfortunately one day be blind, that is of course, unless there is a cure between now and then. I am trying my hardest to come to grips with this. Yes, we are good parents and we try as hard as we can, and yes, we will give her the best life possible…..but this is just simply NOT ENOUGH. How could this happen to our baby girl? Why can’t I wake up tomorrow to find that this was all a bad dream? What kind of life will it be to be both deaf and blind? The answer is, I do not know. What I do know is that I am going to give every inch of myself into finding a cure. This can’t be it for Rebecca. We have overcome deafness, it became a walk in the park. We immersed ourselves into ASL and became completely comfortable with deafness. Deafness was like the common cold, but THIS? REALLY? It just isn’t fair. Do I learn tactile sign language and teach her braille? Maybe. Right now I’m just going to hold her close, and enjoy every minute of her looking back at me with those beautiful blue eyes. The one thing that I ask of all of you, is to name a place…..whether it be right down the road, or in another country. A place so beautiful that it has stuck in your memory and you never will forget. That is the place we want to take Rebecca to. We want to take her to as many beautiful places as we can so that she will have them in her memory, always, before this awful disease robs her of her eyesight. Thank you all for your love and support, it means the world to us ❤
Usher Syndrome Registry
Its so important for anyone with usher syndrome to register so that they are in contact with the researchers who are working to cure this awful disease. If you or someone you know has Usher syndrome please register at the usher syndrome registry.
The Big DayDecember 15th, 2016
The big day is here.