January 10, 2003
I wasn’t alive when Pearl Harbor was bombed, when Kennedy was assassinated, or when Neil Armstrong walked on the moon. Those are the days that stand out in the history of most of our lives. The cold and cloudy winter day of Friday, January 10, 2003, may not stand out in anyone else’s history, but for me, it was the day that would change and define my life. It was the day I first heard the word holoprosencephaly.
Holoprosencephaly. 17 letters and 7 syllables.
ho-lo-PROS-en-cef-a-le. We call it HPE for short.
As parents, we all think that we are going to help mold our children and help them to find their purpose in life. In my case, Sammy helped me to find my purpose in life as he opened a new world to me. As a result, I organized a group of other HPE parents, and together, we formed Families for HoPE, Inc., an organization to encourage, support and educate families who travel the same journey I have traveled.
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