We were just another family saying “Fragile WHAT?” when our son Andrew was diagnosed with Fragile X syndrome back in 2002, three months before his 2nd birthday. After his diagnosis, many other carriers were discovered in the family, including cases of FXPOI and FXTAS. It’s now difficult to remember a time when we weren’t a part of the international Fragile X family.
Connecting with other Fragile X families has been a great way for us to feel supported and to learn how to help our son become the best he can be. We’re a part of the Fragile X Association of Michigan, one or both of us have attended all international conferences since his diagnosis and we connect with families in multiple ways via the web. We’re grateful that the NFXF, Dr. Liz Berry-Kravis and the Fragile X community has been there for us and we try to be there for other families in many ways. Mary Beth has been on the Fragile X Association of Michigan Board of Directors since 2004. Ted was honored to join the NFXF Board of Directors in 2010.
It’s hard to believe our only child is now a 10-year-old! Andrew may be affected by Fragile X in many waysAndrew may be affected by
Fragile X in many ways…but he
doesn’t let that stop him.: he’s nonverbal, has many sensory issues, severe ADHD and anxiety and also has autism… but he doesn’t let that stop him. He’s always on the go, keeps his parents busy, is affectionate and loves to communicate his desires and be in charge of our family’s schedule.
Although we advocate for early testing and intervention and participate in multiple research projects reaching toward better treatment or a cure, we cannot imagine the apple of our eyes with a different genetic makeup!