On August 27th I wrote a heart-felt letter to our mayor asking her to consider adding the city of Everett to the list of those who will honor Lissencephaly Awareness Day on September 8th. To my surprise and delight, she responded back the very next day with the signed proclamation! The lissencephaly community has been trying to make this day a reality all over the US, and the organization We Are Rare (weareRARE.org) has been helping them out.
It may not seem like much to others, but having a daughter with a rare neurological condition has opened my eyes to the incredible value of simply being recognized. Community awareness is such a vital part of helping those who are living on the fringe feel part of the community as a whole. The simple step of recognizing Lissencephaly Awareness Day is the perfect way to open the door to community involvement and support for special-needs children like Elise. To meet Elise is to know the meaning of love and light. I want more of our neighbors to get to experience the amazing impact these children can have on our community!
Thank you to Mayor Cassie Franklin!!
This blog is all about this spunky, sweet, independent, loving girl and what life is like living with lissencephaly. Welcome!!