USH Connections 2019

Two years ago, we went to our first Annual Usher Syndrome Coalition Conference in Chicago.  We were in such a different place than where we are today.  While I loved the city of Chicago, I can remember being overwhelmed with worry and fear.  Chicago was great, but the reason for our visit there, absolutely terrified me.  Rebecca was only one year old, and her future to us at that time, wasn’t looking so great.


A photo of attendees sitting at rows of tables. There are two screens, one showing information about a new treatment and the other captioning the speaker.

Fast forward two years to this past weekend, where we attended our second Annual Usher Syndrome Coalition Conference which was held in Philadelphia.  I was excited, happy, hopeful, and looking forward to seeing this new family that we are now a part of.  Rebecca is now three years old, and her future to us, looks amazing! I’ve mentioned before in a previous blog post how time changes everything, and this weekend was another example of that.


While I remain hopeful for a cure, my focus is on happiness and living our lives.  Rebecca is such a happy little girl, and so is her sister Reagan.  Yes, Rebecca has some vision issues, balance troubles, but she is SO happy.  Her vision is going to get worse as time goes on, but as long as she is happy, does it really matter?


Reagan sitting next to her new friend Kailee, they are both smiling wide and looking at the camera

This past weekend we saw parents of newly diagnosed children with Usher Syndrome who were probably in the same boat we were in a couple years ago, but what we also saw, was a great big room with 400 people, most of which were HAPPY.  Usher Syndrome does not define their lives.  We were just happy to be together with people who understand, people who support each other, people who we now truly consider our family.  There were guide dogs, and canes, and ASL interpreters, and in our first year this was all so overwhelming.  But this year it was different.  I tried my best to suppress Rebecca’s urges to pet the guide dogs LOL,  while she had the awesome opportunity to see other kids and adults with CI’s who were just like her.  Reagan befriended a girl name Kailee who was deaf and did not use CI’s.  Reagan did her best using ASL to communicate with her, and by the end of the day they were attached at the hip, hugging each other, and trying to figure out when we would see each other again.

In the beginning, we felt so alone.  We no longer feel that way.  Our family has gotten so much bigger!


Rebecca, Reagan, and Rebecca Alexander pose for a picture. Rebecca has a serious look on her face and Reagan and Rebecca Alexander are smiling

We are so grateful to the Usher Syndrome Coalition for putting this event together everyyear, and for all the work they do to keep us all connected.  They are such a crucial piece to all of this, as is the Usher Syndrome Society, Ava’s Voice, Hear See Hope, Rebecca Alexander, and others. 


It’s ironic that with Rebecca’s diagnosis of Usher Syndrome and vision loss, she is helping us to see the world, city by city, enjoying life with her big sis, and meeting the rest of her extended family.  We are leaving this years conference inspired and driven to do more.

So much love to you all!!


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