Tuesday, June 16, 2015


Today is June 17, 2015.  It is a Wednesday.  In Arizona it is somewhere in the 100s.  It is 5 days before the official start of summer and 2 days into monsoon season.  It is just another day in June.  

Today Sonya's oldest sister will go to dance camp; hopefully she will spend her day laughing, smiling, and dancing to her hearts content.  Sonya's brother will be at gymnastic camp; probably missing his sisters and hungry, but still managing to have a good time.  Sonya's other sister is most likely going to spend her morning jumping around the house with her brown pigtails and pating Sonya while saying "zoa ahva".  Sonya's dad will be working, and me...once the day gets going I will spend it driving around town in the rented Tahoe dropping kids off and picking them up from activities.

You see today is just another Wednesday in June.  Except this year, today, June 17,  will be the first of many June 17s that our family will spend the day wearing shirts with the words "CDKL5 awareness".  We will start a tradition of green and purple balloons tied to a yard sign in the front yard for the neighborhood to see.  We will spend the day thinking just a little bit more about CDKL5, (like that is possible) and we will think about all the children and families that have become part of our family due to a string of five characters.  

Today we will be a bit more outspoken about CDKL5 and we will hope someone who has never heard of it will go to their computer, type the characters in and learn a piece of information about a rare genetic mutation they didn't even know existed yesterday.  

Today all over the world events will occur to help raise money to continue research to hopefully one day find a cure for CDKL5.  Today all over the world families will be trying to bring awareness to CDKL5.  

What will you do?

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