World Rare Disease Day

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Today is World Rare Disease Day.  1 in 10 people are affected by a rare or genetic disease, and yet the support for those (and their families) that are afflicted by a genetic condition is minimal.  Today is all about raising awareness for the millions of people worldwide who are affected by their rare genes.

My own son is rare.  He has a duplication on his second chromosome which has caused some developmental delays, but also some gifts.  He is an amazing child despite (and because of) his struggles. I love my rare boy!

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2 thoughts on “World Rare Disease Day

    • It’s going alright, except for being a zombie. I’m not sure if it’s due to the IUGR and being small or what, but at 4 months old Paige still nurses like a newborn and it’s exhausting. Balancing her needs with Trevor’s needs can be tough too. Babywearing is a lifesaver!

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