On January 20th, 2016 our second child, Rebecca was born, and we fell in love for a second time.  This is a story about our baby Rebecca, it is sad but it is also filled with so much hope, lots of love, and tons of joy. What hides behind those beautiful blue eyes is something that terrifies us every day. Rebecca was born with a rare syndrome known as Usher Syndrome type 1b. We are in a race against time.  If a cure is not found, Rebecca will not only be deaf, but she will also start going blind around ten years of age.  We are sharing our story to raise awareness about Usher Syndrome so that some day a cure may be realized.  We also want to share our experiences so that families of newly diagnosed Usher kids will find strength in knowing that there are other families out there that are venturing down the same road.  Welcome to our journey.


Our Story (Background)

Information on Usher Syndrome

This is what its all about



  1. Dorothy Casey · · Reply

    Love, hugs, and prayers. For Rebecca and her family.xoxoxoxo

    Liked by 1 person

  2. Julie DiGiacomo · · Reply

    God Bless. Your family is beautiful!

    Liked by 1 person

  3. mary rogers · · Reply

    Is there a place to send a donation towards your efforts..?

    Liked by 1 person

  4. Hi Mary, Thanks so much for the generousity. We are not accepting donations personally but if you want to help support the cure for blindness we are always happy to send our suporters to the foundation fighting blindness. You can make a donation and help all people with degenerative retinal diseases.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: