Tami Hicks

When Ethan was diagnosed, it was during the days of dial up Internet. We were terrified and there was limited knowledge, so much less than now. Tami and Ethan’s father, Todd, were told Ethan was the fourth known individual living in Indiana with AS at the time.  We attended our first international conference a few months after diagnosis, and we were joined by 100 people from all over the world.  We have come so far. With the development of FAST and ASF, Tami and Ethan have learned from others the good, bad, and ugly, but it is because of the network of families that they manage day to day life. It is Tami’s hope to make the journey at least a little bit better, a little more informed for those beginning their journey.