Share your story! Who is an Xtraordinary Individual in your life? It could be a teacher, sibling, or someone living with Fragile X. We share these stories on social media to inspire the community and help raise awareness for Fragile X. There are Xtraordinary Individuals everywhere.
You can upload a photo, video, or both. Check out all the videos on our YouTube channel.
Nominate Your Xtraordinary Individual
My son is amazing … as I recently learned he has a rare mutation of Fragile x, which caused him to have autism traits … it’s been more of a learning experience for both my son and me, but he has been one amazing teacher and tour guide thru this all … he smiles every day with no fear in his heart.
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He is a very kind and loving young man. He has progressed way more than we expected. Everyone who meets him loves him.
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The Foundation has been important because of the information available.
He is improving in all his activities, works hard at McDonald’s, likes his friends, and sees life with happiness. Always looking for ways to help his friends and in the house.
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Well, in the beginning of the diagnosis, the information on the website is really good.
Watch a Short of MichaelCurran is the most down-to-earth and grounded person I know. He loves life and laughter, and always sees the best in people and situations. His humor is contagious, and he has grown into such a fine young gentleman.
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The ways that Knox adapts to life is xtraordinary. He is non-speaking currently but communicates so much through his AAC device, sign language, body language, etc.
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By raising awareness and helping bring our community together so we feel seen and supported (:
Watch a Short of KnoxMy son was diagnosed with Fragile X syndrome full mutation, and from the moment I learned what that meant, he began teaching me things no classroom ever could. He experiences the world with an intensity and sensitivity that most people never access — he feels joy deeply, he loves completely, and he faces challenges with a quiet persistence that humbles me every day.
As his mother and a Fragile X premutation carrier myself, I have walked this journey from both sides as someone whose own genetics are part of this story, and as a caregiver navigating a system that rarely has resources for immigrant families like ours. We came from Bangladesh. We did not know anyone else who had heard of Fragile X. We found NFXF, and for the first time we did not feel alone.
My son is extraordinary not despite his diagnosis but because of who he is fully, completely, and on his own terms.
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NFXF gave us knowledge when we had none, community when we felt isolated, and hope when the diagnosis felt overwhelming. As a Bangladeshi immigrant family, finding resources that helped us understand and navigate Fragile X in an unfamiliar country was life-changing. NFXF has been our anchor.
When my son was diagnosed, I did not just grieve. I picked up my needle and thread. As a textile artist trained in the centuries-old Bengali folk tradition of Nakshi Kantha embroidery, I have spent my career making invisible experiences visible through art. After his diagnosis, I turned that practice toward the experience of Fragile X caregiving — the exhaustion, the love, the isolation, and the fierce quiet strength that defines life as a caregiver.
My ongoing body of work, Complexity of Motherhood, uses textile and mixed media art to give visual language to what immigrant caregivers of children with rare genetic conditions feel but rarely have space to express. This work has been exhibited in the United States, permanently acquired by a university museum, and accepted into the College Art Association’s annual conference as a scholarly paper.
As a premutation carrier, I also carry this story in my own body. I know what it means to receive a genetic diagnosis that changes how you understand your past and your future. I want other immigrant families — especially those from South Asian communities where Fragile X is almost completely unknown — to know that they are not alone, that their story matters, and that art can be a form of healing.
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NFXF gave me the knowledge to understand what was happening in my own genetics and my son’s diagnosis. For an immigrant family navigating an unfamiliar healthcare system in a new country, having a trusted, comprehensive resource like NFXF has been invaluable. NFXF showed me that there is a whole community of people who understand this journey, and that has made all the difference
Miles delights in life’s simple pleasures and inspires the same fun-loving attitude in all those who come to know him. His progress is measured by perseverance, not comparison. Though his milestones may look different or be achieved on a slightly different timeline, every skill he gains is built on resilience and effort. Miles is forging his own path, and constantly changing the hearts and minds of those around him. He has a wonderful team of family, friends, and practitioners around him who believe deeply in his potential. We love our sweet Miles more than words can say. His father and I are beyond proud of him and all he’s achieved in his almost-two years of life.
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NFXF made the early days of diagnosis seem a lot less daunting and lonely, and has made it possible through some reimbursement benefits for us to travel to out-of-state clinics to participate in specialized research.
Watch a Short of MilesDiego is the sweetest, most loving little boy. His smile lights up any room. He is always happy. He works hard and shines bright every day!
Zac has a contagious laugh, and his smile can brighten any room. He makes people around him happy. He loves everyone, especially Jesus! Even when things are hard, he keeps trying until he accomplishes it. He is the most loyal, loving, and kind person. He remembers and hears everything. He reminds me of things like stopping by the pharmacy, what I need at the store, and when I miss my turn. lol! I am so blessed God chose me to be his mom!
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The NFXF has given me (us) a wealth of knowledge and resources to see that we are in touch with the latest treatments, doctors, and to answer any questions we may have.
