What is it like to have fragile X? What is it like to be a parent of a child with fragile X? Meet our kids. Each family has a story to tell.
Our family continues to marvel at Taylor’s progress every day. Regularly now, Taylor answers questions with 3 to 5 word appropriate responses. Previously his answers would be limited to either no words or maybe a 1 or 2 word answer, and you rarely knew if he was actually giving you the correct response or not.
Allison was diagnosed with Fragile X at 3 months old when we learned her cousin, Grant, had Fragile X. It was devastating to learn that my first child, my newborn baby girl, had a genetic disorder, and that my three-year-old nephew had the same disease. I don’t remember much about that time–except searching through dense fog to find answers.
Andy is 28 years old now. He lives at home with us, his mom and dad, two cats, and a dog.
Andy can understand most of what people say, but is usually too anxious to let you know. He will cover his face whenever someone walks into the room – even his mom or dad!
Anders showed signs of fragile X early on. At 9 months, his very low muscle tone prevented him from sitting up straight and turning around easily in his crib. Anders did not show much interest in other children; his play was very simple and repetitive. His dad says that his early fascination with vacuum cleaners and leaf-blowers is still going strong.
Luke wakes up every morning with a smile on his face. And that joy stays in his heart all day long. Except when it’s time to turn the tv off or shut down the ipad. Then all hell breaks loose. He screams and carries on until I either have to give him a time out or I hold the beloved device in my extended arm and promise to give it to him if he calms down.
Where’s Angel?” Lucas asks, over and over, when he is upset. Our service dog, Angel, literally opened doors for my family. She stopped Lucas from running into traffic, kept him from wandering away on walks, and gave him comfort in tough environments like restaurants. She helped teach him social skills, as people approached Lucas to pet his dog.
Niklas is a 16-year-old who exemplifies the spirit of love and happiness in all he does. He was diagnosed at just 16 months with Fragile X.
Looking back, the most difficult years were before his speech developed. He was extremely frustrated that he was unable to communicate his needs.