Rhett is the middle child of Jason and Christina , he is 13 and attends
Holton Middle School, he was diagnosed with mosaic Fragile X in 2004 along with
his older brother. Fragile x is the most common cause of inherited intellectual
impairment and the most common inherited cause of autism. Rhett recently attended
the 12th Annual National Fragile X Foundation’s Advocacy Day in Washington DC
accompanied by his mother and grandmother, Nancy. This year there were
200 advocates from across the country, and a record number of self-advocates, Rhett
being one of them. There were 9 advocates from the Kansas Fragile X Support
Group in attendance.
Rhett
did an amazing job representing children and individuals with
Fragile X across the nation. 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. The
support he has received from his teachers and classmates throughout his school
years has been amazing and appreciated.
Rhett
suffers and over comes adversity on a daily basis, due to his Fragile X
Syndrome. He had to overcome many obstacles just to participate in this
Advocacy day, and we along with the other members of the National Fragile X
Foundation are very proud of him. Every part of the process was completely new
for him. From airport security to first plane ride, to meeting other self-advocates,
attending training, and speaking to congressmen and senators. He overcame his
anxiety and went through airport security and experienced his first plane ride.
He overcame his uncomfortableness in large groups to participate in an 6 hour
training (with 2 breaks), as an active participant, where he had to practice
what he would say in front of a group of 10 people all while being in a room
with 200 advocates (parents, siblings and self-advocates). Rhett was able to
see some amazing things while in D.C. He is an avid CNN watcher and had a small
list of things he absolutely wanted to see, like the Lincoln Memorial, the
Martin Luther King JR. Memorial and the Tomb of the Unknown Soldier changing of
the guard’s ceremony. He was able to see all of those things prior to the start
of training.
Then
we got to take the trip to Capitol Hill. We received a personal tour from
Congressman Greg Harper, from Mississippi, who has a son affected by Fragile X
Syndrome. We were able to start our day in the House Chambers, where Rhett was
asked by Congressman Harper to please sit in the front row. We were able to
learn about the history of the House Chamber and see where the President walks
in to address congress during his yearly State of the Union. We then began a tour of the rotunda and Rhett
was personally escorted to the “House Balcony” by Congressman Harper to see the
amazing view. We spent the rest of the day walking through the Senate and House
buildings on Capitol Hill and meeting with staffers (members were very busy due
to the impeding snowstorm).
Rhett
was able to tell his story to the following people: Emily Mueller, Health
Policy Advisor for Pat Roberts, who 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!”.
Joe
Badger, legislative correspondent for Jerry Moran, had this to say about
meeting Rhett, “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. We appreciate you taking the time to visit us
in Washington, and we certainly value having you as a resource on these
important issues. Please feel free to
contact me if I may ever be of service.”
We
also met with Michael Brooks, legislative assistant for Kevin Yoder, and Colin
Brainard, Senior Policy Advisor of Health & Tax for Lynn Jenkins. We are
working on planning a follow up visit with Congresswoman Jenkins in her Topeka
office, and are hoping she will be able to join us at our local walk this fall.
All of the Senators, Congressmen and staffers were sent information packets
about Rhett before his arrival which included the campaign video he made when
running for STUCO representative this year, and upon meeting them Rhett passed
out a business card and brochure to each member. He was treated with the upmost
respect.
Since
Rhett received his diagnosis of Fragile X in 2004 we have faced and overcome
many obstacles, from educating ourselves, our doctors and our IEP teams about
the syndrome to desperately trying to spread awareness. This was an empowering experience;
one that you could walk away from knowing that your voice was heard and it was
a truly amazing experience. Rhett had such a positive experience and was so
well accepted that he is looking forward to attending this special day
annually.
Now, we have been home for a week.......Rhett is experiencing the typical "blues" that occur after leaving such a large group of people that truly understand, respect and care about you. Even though we have to resume our "normal" lives, he and I talked about how it is pretty awesome to know that you are part of something much bigger, and it is pretty great to learn what I have tried to tell him for years, that yes Rhett, you are a pretty BIG DEAL!
