Talitha Humphrey

Son Seth, 8 and Daughter Audrie, 5

“When the pediatrician told my husband and I that Seth has fragile X syndrome, we had so many questions. But the biggest thing was fear—of the unknown, of what the future would hold. But then our family and friends stepped up, and they were more supportive than we could ever have imagined. It all became like one big family for us. When testing showed Audrie is a carrier, we weren’t fearful anymore. My kids are everything to me. They have helped me overcome my own carrier issues just by being who they are. Now, my hope is centered on the outside world’s acceptance. The NFXF helps tremendously in that. It would be great if a cure were possible, but until then, just getting people to better understand Fragile X is something I work and hope for every day.”

Mike Makris

Son Hayden, age 7

“Five years ago, if you’d have asked me what is positive about having Fragile X in our family, I’d have said, ‘What could be positive about this?’ But now, with all the people we’ve met, the community we’re a part of, the love our kids experience—it’s all changed. Our own families have been amazing in how they’ve embraced Hayden, but when we talk about family now, it’s not limited to our own families, because it includes the Fragile X family. There are so many heroes in that family. And the National Fragile X Foundation is the glue that holds the larger family together. They help make possible the hope I have for Hayden, that he can continue to keep that smile on his face and go through every day with happiness, knowing he’s loved for who he is.”

Jaime & Tamaro Hudson

Sons Elijah, 12, Daniel, 5 and Daughter Sara, 9

“We’d never heard the word “Fragile X” until Elijah was 4 years old. Sara was 2 then, and her testing showed she has fragile X syndrome, too. (Daniel doesn’t.) We had to decide how and what to tell all our relatives. It took a while to figure out the best course of action. No matter who you are, you need something to hold onto. It tested our faith—and made us better people. Going to our first International Conference made a huge difference. To be with so many other families who shared so much with us really gave us hope. We’ll always be grateful to the National Fragile X Foundation for making it all happen. What the foundation does in advocacy and research funding not only helps kids with FXS, but it advances the whole disability field.”