What does it feel like to have Fragile X? What is it like to be a mom? Meet some of our families. Click on an image to meet a child. If you would like to donate in honor of a special child, we will let the family know. Thank you!!

Family Stories

  • Turning 22 with Fragile X Syndrome – What’s Next?
    Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by this transition. Our son, Ryan, had been attending a residential school, New England Center for Children, for the .....
  • Rolling Stone Magazine: Luke’s Best Chance: One Man’s Fight for His Autistic Son
    Rolling Stone Magazine published a powerful article by award-winning writer, Paul Solotaroff, featuring his son, Luke. Luke is 17 years old and has fragile X syndrome. What will happen when Luke becomes an adult and no longer has a right to schooling? Read .....
  • Simon is weird and wonderful. He's friendly and curious and talks non-stop. He's an athlete and an artist. He's unbelievably generous and crazy stubborn. He often repeats sentences. When his mom reprimands him for something, he'll say, "Well I have Fragile X." His next sentence is often, "I want to get rid of it." Sometimes he says, "It's your fault."Simon is Weird and Wonderful
    “Well, I have Fragile X” Simon is weird and wonderful. He’s friendly and curious and talks non-stop. He’s an athlete and an artist. He’s unbelievably generous and crazy stubborn. He often repeats sentences. When his mom .....
  • Elizabeth Higgins ClarkThis Is My Brother, speech by Elizabeth Clark at FRAXA’s Fall X Ball
    In a heartfelt, humorous and insightful speech, Elizabeth Higgins Clark imparts the inspiration and love she has received from her brother, David, who has Fragile X Syndrome.  Fragile X is the most common form of genetically transferred intellectual .....
  • Darren’s Smile
    Darren’s Smile – This is a very difficult post to write because it is about a son, Darren, who has passed away. Darren’s dad has written a memoir – a beautiful tribute to his son. Darren had Fragile X syndrome. He lived a rich life and was very .....