Only a month and a half away and so much to do but we are in really good shape and really excited about a fun night out to help raise awareness about Usher Syndrome, and generate proceeds to help find a cure for blindness.  We have had tons of support from friends, family, and our community […]

This is a TED X talk by the CEO of the Perkins School For The Blind, Dave Power.  We have a teacher who comes out from the Perkins school once a month to work with Rebecca.  For folks who do not know, the Perkins School For The Blind is where one of the most well […]

On one of our visits to the ophthalmologist we were told that we should start familiarizing Becca with the Lea shapes (as to why, you can find more about Becca’s journey here).  Because of her retinitis pigementosa, which is a retinal disease associated with Usher Syndrome, she will need to start vision testing much earlier […]

Rebecca is getting used to her CI’s, as are we.  She leaves them alone most of the day, only pulling at them when she’s bored.  She blinks when a loud sound is made, and she even wiggles and dances when she hears music!  She is making a lot more sounds already, and she seems to […]

In honor of our daughter Rebecca and all others fighting this disease, we are holding a fundraiser to raise awareness and funds for Usher Syndrome, the leading cause of congenital Deaf/Blindness.  All money raised will be donated directly to the Foundation Fighting Blindness who are leading the efforts to find a cure for Usher sSyndrome.  There […]

Today was the day we’ve been anxiously waiting for for almost a year, Rebecca’s Activation Day.   We went into the appointment very nervous, yet so excited! Reagan wanted her voice to be the first one Rebecca heard, and so it was. Rebecca was busy playing with toys when they turned her CI’s on, and […]

Rebecca is doing quite well.  Unfortunately her Physical Therapist was in a car accident just after Thanksgiving, so Rebecca hasn’t had PT in quite a while.  We’ll be starting weekly PT up at Children’s Hospital next week until her regular PT from Early Intervention is back.  As I previously posted, Rebecca has CME (cystoid macular […]