I sat at a nearby bar long after the fundraiser was over talking with Jean.  We talked about the joys and the struggles of raising a child with special needs.  As we talked, I was reminded of my own experience after Taylor was diagnosed in January of 2018. After the initial impact of receiving an official diagnosis, I wanted to know how I could help.  I wanted to find out as much as I could about the condition. I wanted to connect with other families.  I wanted to raise awareness for a genetic condition so obscure, only 300 people are diagnosed to date.  I wanted to do EVERYTHING I could to set Taylor up for success.