Sunday, March 3, 2013

My Daughter is One in a Billion...Literally!



So, I never quite managed to blog about Rare Disease Day in the days leading up to it.  Last year, we made t-shirts, encouraged everyone to wear blue, and spread the word.  I even asked people to send me pictures of them in their blue and did a photo collage of it on the blog!  This year...I just never quite got around to it.  I have been just super busy all around with two awesome kids, so I think that's a good enough reason.

I did share a few Rare Disease Day pictures on Facebook and write a post about raising awareness for those living with rare diseases.  That should count for something, right?

And my dear Abby celebrated Rare Disease Day in her own way, with her own color scheme.  She decided that princess tutus just SCREAM awareness.  They scream something...





1 comment:

Raelyn said...

Julie....
All caught up!! For now, at least!! ;-D
Does CCMS affect one out of a billion babies? Seriously....? I was born with three birth defects. Craniosynostosis. {No soft spot}. A Congenital Diaphragmatic Hernia. {A hole in my diaphragm}. And, Wolff-Parkinson-White Syndrome. {A rapid, irregular heartbeat}. Though neither are considered diseases, one out of every 2,000 live births are affected by craniosynostosis. This neurological birth defect mostly occurs in male babies. One out of every 2,500 live births are affected by Congenital Diaphragmatic Hernia. In fact. Approximately 1,600 babies are born each year with CDH. And lastly. One to three in 1,000 people worldwide are affected by Wolff-Parkinson-White Syndrome. All three birth defects were surgically repaired. Does this qualify me as being "rare", too? Just wondering.... ;)
--Raelyn