Friday, November 21, 2014

I *heart* Someone Rare


Rare disease:  
defined as a a disorder or disease that impacts fewer than 200,000 Americans at any given time (figure from Rare Disease Day) 

Rare Disease Day is just over 3 months away from today~February 28, 2015.

I will be wearing jeans this year to bring awareness to the importance of research and awareness about rare diseases.  

After meeting with our family geneticist, I discovered that someone that I love and cherish is quite rare.  So rare, in fact, that I cannot find any information online about his specific chromosome duplication. 

He is ONE of a kind.



He is HAPPY.

He is THRIVING.

He is RUNNING.

He is ENERGETIC.

He is LOVING.

He is GENTLE.

He brings JOY to all.

His LAUGH is contagious.

He is AMAZING.

Please consider wearing jeans on 2/28/15 to honor my son, and other unique little ones.

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2 comments:

  1. We're in the process of genetic testing for one of our kids, too. 17 months after adoption, we're still chasing down a diagnosis. Although mine is not happy, thriving, running, etc.

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    1. Tough stuff Shecki. I hope you find your answers and that things improve. xo

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