What would you like others to know about him?
Honestly, there are so many things I want others to know about him. My dad was a hard worker. While I grew up, he worked full time. In his free time, he loved to golf. He had the BEST handwriting. He is smart. He is kind. He loves my mom more than words can describe, and he tells her that he loves her all of the time. He carries a lot of guilt for having passed on Fragile X to me as a carrier, and full mutation to Cody. I have told him that he needs to let it go because we had no idea about Fragile X until Cody was 18 months old. He is not responsible, therefore, there should be no guilt. He is so supportive of everyone: family, friends, and strangers. He has a great long-term memory, however, his short-term memory is challenging. He is 74. He has FXTAS. He is one of my best friends.
What is your favorite thing about him?
My favorite thing about him is his ability to make a huge problem seem insignificant. He doesn’t care what other people think of him. When I share with him about something that is happening, he’ll say “Who cares?” or “Let it go.” I love that about him.
If you could tell someone who doesn’t know anything about Fragile X one thing, what would it be?
Fragile X is a family issue. Whether you are a carrier or affected, it is life-changing. FXTAS is awful. It really is. There is nothing glamorous about it. It robs a person, who lived a life full of endless opportunities, of their ability to be independent, to walk, to eat without spilling, to make reasonable decisions. It causes falls which result in breaking bones.
What is your advice for newly diagnosed families?
Seek others who can relate to you in regards to your concerns and your celebrations. Seek others to lean on and let others support you.
What do you want your community to know about Fragile X?
I want the community to know that we are amongst the strongest and fiercest parents on earth. While we are ready to educate others, fight for what is best for our kids, our parents, etc… We also would love to be checked on and supported. Reach out. Ask how we are doing, ask how you can help.
What advice do you have for parents/caregivers who are considering participating in research studies and/or clinical trials?
Do it! But before you do, know the advantages and the disadvantages. Know the details, how long will the study/trial last? What is expected of you or your child/spouse/etc?
About Faces of Fragile X
We asked parents, caregivers, and others to answer a few questions about their loved ones with Fragile X. These are the Faces of Fragile X, and This is Fragile X. If you would like to learn more about Fragile X, start here.