We spent the day in Boston today, it was great to get out of the house, all of us as a family.  What a beautiful day, this 3rd day of Fall.  We were at Northeastern University from 8:30am until 1:00pm at a Shared Reading program put on by Gaulladet University.  We spent our time there […]

Obviously I know that the day will come, the last day Rebecca sees my face, I just never would have thought the day would be coming so soon.  How am I going to hold on to her?  How am I going to be able to see her vision go?  I can’t let go, I won’t […]

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 […]

Rebecca’s got a new pair of shades!  She’ll have to wear these every time we go outside. She does look pretty cute though!  

We are learning about all of the treatment options available and although there are no cures yet there is hope for Rebecca. The following link outlines one clinical trial currently underway to treat patients over 18. Needless to say we will be keeping a close eye on this. Gene Therapy Trial

Today we went to Rebecca’s doctors appointment at Children’s Hospital where we were supposed to get the results from the genetic testing, which we in a round-about way found out on Friday.  We brought a binder with us with all of the questions we had.  We were told that we should have hope that there […]