Meet Matt and Nathan Dees – Brothers diagnosed with Fragile X Syndrome in 1981

Submitted by their sister, Anna Kate (Dees) Brown

I was almost 3 when my brother, Matthew, was born in 1978. My parents knew that he was exhibiting some developmental delays, but no doctor could give them any answers. Once my youngest brother, Nathan, was born in 1980, my parents got connected with what is now the Carolina Institute for Developmental Disabilities at UNC Chapel Hill. Fragile X Syndrome, a genetic disorder carried on the X chromosome and displayed as a chipped or broken X, had newly been named as a syndrome with a variety of characteristics including various levels of developmental delays and intellectual disabilities. Both boys were tested and determined to have it, becoming the first diagnosed cases at that institute. My parents were happy to have answers and got to work learning as much as they could, getting involved in the research. We continued to visit Chapel Hill yearly and help contribute to early informational videos for doctors to use when diagnosing Fragile X in others. At the time, we lived in a tiny town called Washington, GA, but it just happened to have a wonderful training center for children with special needs, and at age 3, both boys started attending this year-round preschool at no cost. Because both of my brothers have Fragile X, I never knew anything different. One of my earliest memories is playing with my best friend down the street, who had a sister that used a wheelchair due to cerebral palsy, and meeting other friends and thinking they were the different ones because they didn’t have special siblings like we did! My parents worked hard to include my brothers in everything and not change what we would normally do because of Fragile X. When we moved to Athens, GA in 1985, my mother continued to advocate for the boys and became an early board member for Extra Special People (ESP). ESP provided a summer day camp for children with all types of disabilities, and my brothers greatly benefitted from participating each summer. When I was getting ready to go off to college, my parents took my brother, Matthew, on “college visits” as well, searching for the best placement for him. He was excited to find his “college”, as well. By this time, my family had relocated to NC because of the opportunities for my brothers’ futures. Nathan continued to live at home until he was 20 and graduated from Hendersonville High School in NC. He even had the opportunity to go to Washington, DC as part of the senior leadership team, which he served on as the representative from his special needs class. Prior to taking the trip, the teacher explained to the other guys in the class that they would have to share responsibility for taking care of Nathan as there was no adult male chaperone on the trip. The guys unanimously said that the wanted Nathan to go and looked out for him as he traveled without family for the first time. Though they have both been diagnosed with Fragile X, they are very different. Matthew, who now goes by “Matt”, has more behavioral issues, and Nathan has better cognitive skills. Matt has a very good spatial ability and loves to work puzzles. It’s almost like he can visualize the shape he’s looking for and immediately find the correct piece. He also loves to give people special nicknames and resorts to using only those nicknames (with A LOT of enthusiasm). My nickname is “Zee Teachah”, and he calls the lady that manages the company that cares for him “Crazy Lady”, but it’s an absolute term of endearment! On the other hand, Nathan is very into sports and listens to all college and professional sports. He loves Duke basketball and often accompanies us to games when Duke plays Clemson. Today, the boys live in a duplex and are cared for by a company that has worked with them for over 20 years. They work in the community and enjoy their jobs and the staff members that care for them. On the days that they don’t work, they deliver Meals on Wheels, with a staff member driving the route. The boys love giving back, helping others and interacting with the Meals on Wheels clients that enjoy their visits so! Thankfully, Fragile X doesn’t have any medical issues that are directly attached to the syndrome, and they (now in their 40s) are fairly healthy and continue to thrive. Growing up in our family definitely gave me a unique perspective, and one that has shaped my life in many ways. My mother always said, “Don’t sweat the small stuff, and in the grand scheme of things, really, it’s all small stuff”.