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08-01-2014 (SPHS) - “Fragile what?” is often the response heard by SPHS sophomore Samantha Rhodes when she tries to explain to others her brother’s intellectual disability.  Most people have never heard of Fragile X Syndrome(FXS) and neither had the Rhodes family until 2006, when the youngest member of the family, James, was diagnosed. 

Fragile X is a genetic condition that can cause developmental and language delays, behavioral and emotional problems, hyperactivity, and intellectual disabilities.  The “X” in Fragile X Syndrome references the X chromosome which is defective in individuals who have or who carry the condition.  Generally males with FXS have more severe symptoms than females.  Females have two X chromosomes, therefore a girl with FXS usually has one healthy X chromosome to help compensate for the fragile X-affected chromosome.

Since 2006, Samantha’s parents, Matt and Beth (7th grade math teacher at Berry), have been educating themselves and others about this rare genetic condition.  This year the National Fragile X Foundation invited Samantha and her mother to speak at their 14th International conference held in Orange County, California.  The conference – “All About Our Girls” - brought together hundreds of doctors, researchers, therapists, parents and individuals with FX to learn from and support each other as the entire FX community attempts to navigate this unique disorder. 

According to her mother, HCS teacher Mrs. Beth Rhodes, Samantha confidentally addressed this year's conference attendees; describing what it has been like growing up mildly affected by FXS herself and also having a more moderately-affected sibling.  In her talk, Samantha discussed her own techniques for maintaining good grades and being successful in school despite having a disability.  She credited her parents and all of her excellent Hoover teachers for helping her create and maintain good organizational strategies and for teaching her to always over-prepare when heading into a potentially anxiety producing task or event. 

Samantha’s next goal is to spread more Fragile X awareness; this time, to Congress.  When she was in seventh grade Samantha travelled to Washington D.C.  There, she spoke with Senators and Representatives from Alabama advocating on behalf of individuals with FX.   This spring, Samantha hopes to return to Washington as part of The National Fragile X Foundation’s Advocacy Day (March 2015).  It’s here she plans to connect with others, including Alabama’s own Congressional Delegation.

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