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Many families in the Fragile X community struggle for years before discovering the cause of their child’s developmental delays. When they finally hear the definitive words, “Your child has fragile X syndrome,” they report feeling almost a sense of relief—often followed by deep concern and even apprehension for what they may be facing with this mysterious new term.
And then comes the hope.
Not always immediately, but eventually, day by day, conversation upon conversation, families discover the knowledge, the allies, and the truly lifechanging support of a caring and cohesive Fragile X community.
At the National Fragile X Foundation, we are proud to be a major organizer and provider of the support that means so much to Fragile X families. We have been filling that role since 1984 while working on multiple other fronts to advance research, coordinate legislative advocacy, organize Fragile X clinics, and contribute much else to an increasingly cohesive—and hopeful—Fragile X community.
At our 13th International Fragile X Conference in Miami, we conducted interviews of parents whose children with FXS had provided them with a renewed sense of purpose, perspective, energy and hope, in ways they had previously thought unimaginable. Below is excerpts of their stories, followed by our powerful Forward Thinking video series on YouTube.
With these tales of hope fresh in your mind, please help the National Fragile X Foundation continue to be a primary source of that hope by making a tax-deductible contribution to our 2012 Annual Fund.
Together, we can continue to make a profound difference in the lives of all those touched by Fragile X. Thank you for your generosity!
“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.”
“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.”
“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.”