Category Uncategorized

Tough words to hear, “Legally Blind”

So as it turns out, my assumptions at story-time were correct.   We went to Perkins School for the Blind last week for a visual assessment, and the results were not what we had hoped for.  We were told that Rebecca’s visual acuity is 20/190+ and that she is right on the fence of being legally […]

Feeling Like We Don’t Belong

I took Rebecca to story time this morning as I usually do on Thursdays.  We walked in and sat on the floor with the rest of the moms/grandmothers and their toddlers.  A few minutes into story time Rebecca was curious and got up to go look at something at the back of the room.  A […]

Now Approaching Boston

This past weekend I spent a good portion of the day at a visions seminar hosted by the Foundation Fighting Blindness.  It was not until I received a text from Beth that I realized that exactly one year prior was when we found out that Rebecca would eventually go blind.  Before that day I would not […]

Update (Beth)

Rebecca is doing amazing.  She can sign over 40 words now, and she can say “Mama”, “Dada”, “no”, “hi”, “bye-bye” (which comes out more like “die-die”), “Papa”, and she is very close to saying “Grandma”.  Rebecca is walking all of the time now, and considering her lack of vestibular function, she is doing a great […]

USH Connections Conference

  This Thursday we head to the 9th Annual USH connections conference in Chicago.  It will be the largest Usher Syndrome related event we have been to.  Along with 200+ other people, both families and individuals affected in some way by Usher Syndrome.   We will be travelling with mixed emotions, on one hand we […]

Awareness Will Be the Catalyst for a Cure

Rebecca is doing her part to help find a cure.  The Foundation Fighting Blindness reached out to us to ask if they could use her story and her pictures in their latest campaign to raise funds to help find a cure.  We were of course happy to help and love the way the email campaign […]

Breaking Through Medical Barriers

  When you take a look at the clinical trial space its difficult not to see the major flaw with studies that target diseases that are considered rare. The big problem is patient enrollment and retention.  Patients with rare diseases are, well rare… There are a number of efforts that help with the recruitment and […]