Rare Disease Day, 29 Feb 2012

Rare means coming or occurring far apart in time; unusual; uncommon, not typical, extremely uncommon...but with today's social media chances are you know many that are touched by a rare disease.  Since Lucia has been diagnosed with her rare syndrome we have met so many others that are affected by a rare disease... Today, February 29th (the last day of february every year)) marks the fifth year for Rare Disease Day, which is being acknowledged all around the world.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. 

You never know when or why you might be affected by a rare disease...but if and when you are, this day helps you feel less rare, less alone..we feel pretty good being a part of this day.  Thank you for being a part of our Rare Disease Day.  Thank you Lucia for being our rare but shining bright light today and every day! Thank you God for ALL the special people around us.  We pray that Lucia and her friends are helped through the rare and difficult disease of Pallister-Killian Syndrome as they grow and that others affected by rare diseases feel a little less alone and less pain with their rare situation.  

Love, Juliet, Jason and Lucia Dawkins