Saturday, March 5, 2016

Rare Disease Day

     Monday, February 29 (Leap Day) was also Rare Disease day.  My two little ones have PKU (Phenylketonuria) which affects 1 in 10,000.  Definitely making it rare!  To celebrate, we decided to wear the color blue to represent PKU.  I posted it on facebook and my family, friends, and Lily's school amazed us.

     On Sunday, we got a mass text/email from Lily's teacher.  She asked the kindergarten class to wear blue to show support for Rare Disease day and PKU!  When I told Lily, she screamed and had the biggest smile.  Then on Monday, my facebook page was overloaded with pics and comments from family and friends wearing blue!

     The BEST part was when I picked Lily up from school.  Her teacher, the amazing Amber Laue, asked the school staff to wear blue to represent Lily and other kids with rare diseases!  Can you believe it?!  When Mrs. Laue told me, tears immediately filled my eyes.  I'm crying just thinking about it.

     So many of YOU love our family and support us every day.  Many of you, I don't even know.  You may follow my blog because you have a loved one with PKU or you just might be a little crazy like me and follow! ;)  No matter the reason, please know that I am forever grateful and appreciative of you.  Thank you for supporting PKU and other rare diseases.

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