Friday, February 27, 2015

Rare Disease Day

Did you know that there are nearly 7000 rare diseases?  Osteogenesis Imperfecta is just one of them.

Rare Disease Day takes place on the last day of February each year.  This is the first year that we are joining the cause.  "It's a day to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives."

The theme for this year's Rare Disease Day is Living with a Rare Disease.

Through our blog and social media pages, I believe you get a good glimpse of what it is like to care for a child with a severe form of Osteogenesis Imperfecta.

But there are many types of Osteogenesis Imperfecta.  Each individual's OI is so unique to them.  Some are affected so severely that their bones deform as they heal after a break (like Isaiah), but there are some people who live with OI who don't even know it.  Some rarely break bones and some break so frequently that they can't keep count.  Some walk, some get around by wheelchair.  Some dance, play basketball, or do karate!

You can learn more about OI by visiting

Tomorrow is Rare Disease Day.   Tomorrow, we celebrate our rare boy, and this year we'll do so simply by wearing jeans.  (And actually, that's a feat for me nowadays. I live in sweats. HA.)

Please join us in celebrating all of those who live with a rare disease.

Alone we are rare, but together we are strong.

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