Living with Fragile X Syndrome: ‘He is growing…it’s just really slow’

Born with Fragile X syndrome, a rare developmental disorder, Andy Tranfaglia, thrives with the help of his parents and a community of supporters.

In recent weeks, USA Today spent days with FRAXA co-founders Dr. Mike Tranfaglia and Katie Clapp, and their son Andy. Andy lives with Fragile X syndrome and is the focus of a segment of USA Today’s occasional series that explores how scientific advances are transforming care for rare diseases.

The article, “Decades-long quest to beat Fragile X fueled by persistence, science and relentless optimism” is featured on the paper’s website for paid subscribers, as well as news services like Yahoo News, and will be released in print form this week. The companion video is featured above.

This feature offers insight into the daily experiences of those living with Fragile X and sheds light on progress toward development of new treatments for the syndrome.

We thank visual journalist Jessica Koscielniak and writer Karen Weintraub for devoting their considerable talents to helping raise awareness of Fragile X!

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