My Amazing Dad

By Sherri Hatam

As part of Fragile X Awareness, not only do we need to educate others about those with full mutation Fragile X, but we also need to educate the public about the various disorders that are related to the carriers of the Fragile X gene. This is my wonderful, intelligent, and loving father. My father was a very active man until 12 years ago when he started having balance and gait issues. The episodes of his falls became more and more frequent over the years. He started to become forgetful and more withdrawn. It was not until our son’s fragile X syndrome diagnosis about 4 years ago that we were able to pinpoint the root of my Dad’s medical problems.

My Dad has FXTAS. As of 10 months ago, he is completely in bed, unable to feed himself and on a cognitive decline. He is now at home under Hospice care and probably has less than six months left to his life. I visit him daily, searching for a glimpse of the man he used to be. But other than his physical appearance, he has very little resemblance to the intelligent, active man that raised me. I am happy and grateful that he is still with us but feel like I lose a piece of him every day. His diagnosis has been extremely difficult to accept. I am forever grateful to my wonderful mom for loving him and taking care of him over the years.

Thank you, mom! I love you, Dad!