Kathy Menke

What makes Kathy Xtraordinary to you?

My mom is Xtraordinary to our family for several reasons. One is that she is the best caretaker to my dad who has stage V FXTAS. She has made it possible for him to stay home during all of the physical and cognitive decline related to FXTAS. It has been extremely challenging at times, but she always made sure my dad’s needs were met. Just when I think she is about to take a deep breath and count to 10, he tells her he loves her. Completely out of nowhere. And I can see her smile and know everything is going to be OK.She is the best grandma. My oldest son, Cody, has FXS full mutation. She has been to nearly every doctor appointment with me. She has a very special relationship with him. He calls her every morning and they will talk for 30+ minutes. They even have a book club together where she reads to him over FaceTime while he “follows long” with his copy of the book.And as a mom. She is one of my best friends and she always knows what to say to help me put things into perspective. She does her best to relate to things that are happening so that she can give me her best advice.We are lucky to have her tackle all the different conditions of FXS and all of our needs.—Kelly Randels Coleman