How our Fragile X Walk in Holton got started............

"Life begins at the end of your comfort zone" - Annonymous

I have told the story....many times. In the Fragile X world we have lived TWO lives....BEFORE the failed medical trial we did, we were not active in the Fragile X world. We would get some e-mails here and there, maybe send an e-mail, we joined the facebook page.....but we kept ourselves distant. I don't know why, there are a million excuses why. All that matters is AFTER....because AFTER we decided we would not go quietly, we had a community, we had a purpose, and it became our mission to spread awareness whenever we could.
In the Fall of 2013, our oldest son had just started his Freshman year, our middle son 6th grade, and our baby started Kindergarten. We were preparing to attend our very first Fragile X Walk, put on by the Kansas Fragile X Group in Kansas City. I shared information about it, asked people to join us, we all got registered. Then I got a phone call.

Drake with Rhein and Rhett at the first walk

One amazing kid (and his family) had come up with an idea. They couldn't get to KC for the walk, it's an hour and a half away, and they had ACT testing the same morning. So, his mom called me to see if we would mind if they had a walk in HOLTON to support Rhein and Rhett, we would call it a "satellite" walk and that way students, teachers, friends and family could show up and be part of our "team". My first concern was my oldest child.....he never really wanted people to know he had Fragile X, he didn't like to talk about it. But, he admired this boy, respected him, trusted him and he gave the okay.

"Those we meet can change us, sometimes so profoundly we are not the same afterwards." 
- Life of Pi

"Rhein & Rhett's Runners" Cheerleaders!

I will tell you, this made me incredibly nervous, (I have anxiety issues) I was terrified people wouldn't show up. The cheerleaders helped out and ALL the seniors on the football team. We made signs, the kids came up with a team name, they made announcements at school, sold t-shirts and we prepared. The day of the walk came, our amazing friends from KC brought their signs for us to use, and people started to show up.

"Rhett & Rhett's Runners" Senior Football Players from 2013

A lot of people showed up. The smiles on both of my boys' faces was amazing. You see, they are both amazing kids; they are friendly, honest and pure. They love with their whole hearts, but unfortunately sometimes they feel pretty alone. That day..... when students, coaches, teachers and friends started showing up.....they knew they were there for ONE reason, to show them they have support, they are not ever alone.
I have watched that realization of support change both of my children. They are both more confident in themselves. They believe in themselves, they are stronger.
This weekend will be our 3rd walk, that Senior boy has gone on to be a Marine, his cousin (a cheerleader) will graduate this year....but she has worked just as hard the last 2 years to help make it a success. We are lucky enough to live in a true community, filled with people that care, filled with people who "show up". Amazing people can do amazing things.

Attendee's from the first walk in 2013

"If only you could sense how important you are to the lives of those you meet; how important you can be to people you may never even dream of. There is something of yourself that you leave at every meeting with another person." - Mister Rogers