Tag Archives: blind

A Difficult Day

We found out today that both of Rebecca’s cochlear implants need to be ex-planted and re-implanted. We are heartbroken. The feelings are bringing me back to a time not too long ago when Rebecca had not yet heard a single sound. She hadn’t heard a bird chirp, her sisters laugh, or her mom tell her […]

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 […]

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 […]

All Things are Difficult Before They Become Easy

My experience as a parent of a disabled child.

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 […]

Is a Cure to Blindness Really in Sight?

Of course I would love to say emphatically YES, but there are still challenges and obstacles in the way.  With that said however we are closer than ever, the advances in finding a cure to inherited retinal diseases has grown exponentially in the past 5-10 years. We recently attended a presentation at the Carroll Center […]

These Little Hands

Is ASL a Language? A regular question that comes up when raising a deaf child.  It comes up when talking with friends, with family, with other parents, when talking with doctors and specialists, and it comes up during her developmental assessments.  It’s a question I may have asked prior to having a deaf child, after […]

Interview With Molly

Jake’s cousin Molly is a Junior at Fairhaven High School.  Molly is taking a Media Production Class, and for a Photojournalism project she decided to do an interview on us and Usher Syndrome.  Molly is nominated for two student New England Emmy Awards, and she wants to go on to major in Communications. Although we […]

Fundraiser Approaching!

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 […]