Background

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.

Blog

Our Story (Background)

Information on Usher Syndrome

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This is what its all about

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2 comments

  1. Dorothy Casey · · Reply

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

    Like

  2. Julie DiGiacomo · · Reply

    God Bless. Your family is beautiful!

    Like

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