Sunday, May 9, 2010

Fighting Prader-Willi Syndrome

This worthy fundraiser next Saturday spotlights what can happen when a special needs child is born into your life.

Rachel Johnson is a high school math teacher who taught (I believe she still teaches there) there when my son was in high school-although he never had her.  Three years ago she had her first child, a daughter.  From the first (even before she gave birth) she knew something was wrong but the doctors didn't seem to think so (at first).  Last year, her daughter Ellie, now 3, was diagnosed with Prader-Willi Syndrome.

You may have heard of it from listening to Extreme Makeover or (years ago, as I recall) 60 Minutes.

Now Rachel Johnson is a mother of a special needs child, and fundraises to fight this disorder. 

Among other challenges, at some point a "hunger switch" will be turned on in Ellie, and she will suffer from insatiable hunger for the rest of her life (along with a long list of other challenges).

Can you imagine the energy and strength of character this mother is showing?  Only another "special needs Mom" can.  I have not walked in those particular shoes and my heart goes out to her and her family.

Happy mother's day, Rachel Johnson.

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