February 29th is Rare Disease Day
In my own way, through writing about our experiences raising Emily, I continue to spread the word about Cri du Chat Syndrome (CdCs)
I do my best to share experiences that are positive, fun and inspiring. I don’t shy away from writing about struggles but I will always respect Emily’s need for privacy on some more personal topics.
Did you know…
Only 1 in approximately 50,000 born will miss that tiny part of their 5th chromosome…. chances of knowing or meeting another child with CdCs are really small.
Emily was diagnosed before facebook, the information available was outdated and scary. It took us 15 years before we met others with Cri du Chat Syndrome.
Now with facebook, association and blogs, our reach is far greater and parents find up-to-date information much faster.
That being said, it is essential to increase awareness to promote acceptance…
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