A Fragile X Story 60 Years in the Making
The journey of a diagnosis, the impact on a family, the difference having the support of this family we never knew we were a part of. My family also remembers what it was like before the National Fragile X Foundation.
My brother Kyle is now 38, but Fragile X goes back even further in our lives.
My parents spent the first 11 years of Kyle’s life with no knowledge of Fragile X. They recognized that my brother had “challenges,” but they didn’t know why, and, as a result, they didn’t know how best to help him.
This was not new to my mom. Her brother also has “challenges.” Like many children with disabilities in the 1950’s and 1960’s, my uncle went to a school away from home and did not have the benefit of true special education. I look at the difference between my brother and uncle, still apparent today, and I am grateful for all the strides that have been made in special education and in awareness of Fragile X.
In the 1980s, I remember my parents continually worrying about my brother with nowhere to turn for information, support, or resources. His behavior at school and at home was challenging and special education was in its early stages. Doctors and clinicians’ answers were often confusing. My parents, despite all this, were determined to raise their son at home surrounded by a loving family.
Our life changed in 1991, when Kyle was diagnosed with Fragile X syndrome and then my uncle. Our family dug in, committed to giving Kyle the best life we could. The National Fragile X Foundation (NFXF), even while relatively new, was there for us and provided all the latest and up-to-date information on Fragile X to assist us in our journey. Even in the early years of the organization they understood the needs of our family. They were the best resource to help our family navigate the obstacles and challenges we were facing.
My drive to know more about Fragile X extended into medical school. As a resident, I had the chance to learn from Dr. Craig Erickson, a leading Fragile X researcher and clinician and a member of the NFXF Scientific Advisory Committee. I saw the impact and the hope – the positive impact of treatments based on research and practice with Fragile X and the eternal hope of parents for a better tomorrow.
This past spring, I attended my first NFXF Advocacy Day in Washington, DC. I saw 180 individuals – parents, grandparents, self-advocates, siblings, researchers, and clinicians – walking the Halls of Congress, educating our representatives on Fragile X, and advocating for more research and better policies that give people living with Fragile X more opportunities. I realized how far we have come since my Uncle Sidney was a child – from government-funded institutions, void of hope, to an environment of opportunity. Policies that open doors rather than shut them and that recognize the unique value of every individual.
Our Fragile X world is a better place now and will be even better in the future because of all of us – our community, our family. We provide support, share knowledge and raise awareness, and we do it together, to get through today, tomorrow, and every day coming.
It is the Fragile X community that continues to give my family hope, not just for my brother but all individuals living with Fragile X. While Kyle will likely never live alone, he is working part-time at a landscape nursery 3 days-a-week and attends an adult activity center on his days off. He enjoys going out for Mexican food every Friday night and spending weekends with me and my husband.
Reflecting back, the difference between my brother’s capabilities and my uncle’s are striking. We attribute this to awareness, better treatments and educational opportunities for families, educators, medical professionals and our communities – to the incredibly dedicated work of the National Fragile X Foundation. Together, as a family, we celebrate the successes and support each other through the challenges with hope of a better tomorrow.
The NFXF was there for my family and positively changed the trajectory of every family living with Fragile X. The NFXF exists because of you and other supporters like you, and my family is incredibly thankful for that. You have made all this possible. Now, I want to ensure that other families experience this life-altering experience and that the NFXF is there today, tomorrow, and every day after that.
Will you please join me and make a generous donation to help support all of those today living with Fragile X and for those who don’t yet know they are joining the best family they never wanted to be a part of.
Together, We’re Stronger, and together, we will beat Fragile X.
Niclaire Neely, M.D.
Sister of Kyle and niece of Sidney