The BIG DEAL.......

Last week I was in Washington D.C. with my son, we attended The 12th annual National Fragile X Advocacy Day, it was our first. While in Washington my mind was racing with all the things I would write about when we got home, but now of course I can't remember any of those, they will come to me in time I hope. Instead I am just going to share a story, about a boy and his first experience with the Fragile X world. This story (or parts of it) will run in our local paper along with some photos. I can not possibly explain to people how much our Fragile X family means to us, or how much this trip meant to Rhett, but I will try!

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 7^th 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!