A busy few weeks!!

It’s been quite a while since our last blog post.  We have been so busy.  We took the girls to Disney in November just before Thanksgiving, made it through the holidays, and then it was off to Vegas!  It’s been a busy few months!

Disney was quite a trip!  Aside from the typical challenges of taking an almost two year

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Image Description: Beth hugging Reagan with both of their backs to the Magic Kingdom castle

old to Disney, there were some additional challenges that I had not anticipated.  I’ve been to Disney many times in my lifetime, and I have never noticed how the ground slopes ever-so-slightly towards the drains in the parks.  The streets get washed down nightly and there are MANY of these drains.  Unfortunately for Rebecca, these small slopes were a big challenge.  It took so much for her to stay upright, she fell a lot.  At night when her vision was not at it’s best, it was worse.  Of course we had her stroller, but we couldn’t keep her in it the whole time.  When we would take her on a ride that was rather dark, she would repeat “hi” over and over again to get recognition from us that we were right there beside her.  Other than these few challenges, we had an amazing time, and we just loved watching Reagan and Rebecca enjoy Disney together.  They both had an absolute blast after all.

 

As many of you know, most of our focus recently has been on the Becdot the braille literacy device we are developing.  It is so important to us to raise awareness for Usher Syndrome, and the journey to bring the Becdot to market is surely gaining Usher Syndrome some much needed attention.  This past December we found out that the Becdot had won the Not Impossible Limitless Award, and that we would be headed to Vegas.  We were preparing to leave on the 5th of January but just before leaving NPR’s “Hear and Now” wanted to do an interview on the BecDot and what we were up to.  The full interview can be found here NPR BecDot. Then is was off to CES to showcase the Becdot and to receive the award.

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Image Description: A trophy depicting a cube sitting on a table the cube is lit up red.

What an honor, we were blown away!  It was my first time to Vegas and to CES (Consumer Electronics Show), and both of them exceeded my expectations.  The first day there we had somewhere to be every couple of hours, it was equally fun and exhausting, and it didn’t help that I had a cold the entire time we were there.  We had time at the Not Impossible booth to show the Becdot, and to do an interview with Mick Ebling, the founder of Not Impossible, and gather with the other winners for photos.

We were also interviewed (story here) by TechCrunch, a popular tech blog and they helped to get our message out to the world..

Jake and I used to be big fans of the reality show, “Real World”, and so it was much to our surprise that we had a meeting at the “Real World Las Vegas” house and even had an interview in the “confession room”!

Confessional

Image Description: Inside the confessional at the real world Las Vegas house.  The wall is painted with cartoon characters around a sign reading Welcome to Fabulous Las Vegas

It was all pretty exciting for us.  The event where we would receive the Award was Thursday night, and there were 400 people in attendance.  Erik Weihenmayer from the No Boundaries Foundation handed us our award, which was amazing.  We have read his book, “No Barriers”, and are in awe of all of his accomplishments.

 

 

 

 

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Image Description: Erik sitting on a stool with his guide dog by his side, both sitting in front of a large screen with Erik’s picture of him climbing a mountain

It wasn’t easy to speak about something so personal to us in front of 400 people, but we made it through, and you will likely see the video and our documentary within the coming weeks.

Since returning from Vegas we have had interviews with Channel 5 (WCVB), the Today Show, (Article can be found here) and we recently got a call from NBC and are hoping to be interviewed by them as well.

 

2 comments

  1. Johanna Cilenti · · Reply

    Hello I read the story about Rebecca and felt such a connection to your family. Our daughter was born august 2016 and she was born with a rare condition that left her legally blind. It has been extremely difficult to introduce Braille to her because of the little interest she has in it. I would love to know if and when one will be available to the general public. It seems as though it’s in the early stages but i would love to know more and possibly have ava try one even if it’s in the early stages. Thank you so much to your husband for having this drive and determination as a parent to make anything possible for his daughter.

    Liked by 1 person

    1. Thank you so much for writing! We are hoping to bring this device to market within the next few months, and we would love for your daughter to try it. It is very engaging, our daughter loves it. I don’t know how my husbands brain works lol, but I am very thankful that he came up with this device (and others that he is working on) to help our daughter and hopefully other children as well. I’d love to keep in touch!

      Like

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