Holton boy self-advocates in Washington D.C.

 

Rhett takes a selfie in Washington, D.C.

HOLTON (KSNT) – A 13-year-old Holton boy traveled to Washington, D.C. to advocate for himself and others with Fragile X Syndrome.

Rhett Murphy was diagnosed with Fragile X in 2004. According to the Centers for Disease Control, Fragile X is a genetic disorder and can sometimes cause inherited intellectual impairment or autism.

On March 3 and 4, Rhett attended the 12th Annual National Fragile X Foundation’s Advocacy Day in Washington D.C. with his mother, Christina Murphy, and grandmother, Nancy Schlodder.

This year, there were 200 advocates from across the country, including self-advocates like Rhett. The Kansas Fragile X Support Group sent 9 advocates.

Rhett Murphy selfie

While in Washinton D.C., Rhett represented and spoke for individuals with Fragile X across the nation.

He spoke with Emily Mueller, Health Policy Advisor for Pat Roberts.

Mueller said, “He shared with me his personal story of living with Fragile X and advocated for increased awareness and research toward improving treatments for those living with it. His was a powerful story to illustrate to the Senator the impact medical research can have for Kansans and all Americans and we greatly appreciate his engagement as such a young age!”.

Rhett also met Joe Badger, legislative correspondent for Jerry Moran.

Badger said, “I appreciated the opportunity to learn from Rhett and the rest of the group about Fragile X, the challenges it presents, and the hope that the future holds for individuals and families impacted by Fragile X.”

According to Rhett’s mother Christina, they also met with Michael Brooks, legislative assistant for Kevin Yoder, and Colin Brainard, Senior Policy Advisor of Health & Tax for Lynn Jenkins.

 

Christina said, “He also very proudly explained to each member of congress as well as other parents and advocates that he is a 7th grade STUCO representative at Holton Middle School in Holton, Kansas.”

Christina reflected on their experience in Washington, D.C.

She said, “This was an empowering experience; one that you could walk away from knowing that your voice was heard. Rhett had such a positive experience and was so well accepted. He is looking forward to attending this special day annually.”

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