Giving Hope a Hand

Each year at the annual Rett syndrome conference, there is a Tribute Dinner to honor all the individuals with Rett syndrome. It is always a fantastic evening, often with many boys, girls and women with Rett syndrome in attendance. 

In addition to honoring those who have the disorder, other individuals are honored for their service in the field. This can be medically, scientifically, financially. They have honored doctors and researches, individuals who have raised a large amount of money for research or someone who has made a significant impact in the lives of those with Rett syndrome throughout the year. 

This year, much to my surprise, Team Rett of the 117th Boston Marathon was presented with the Giving Hope a Hand Award. Three of us were in attendance and accepted the award on behalf of the whole team. 

 (Team Rett in Boston the day before the marathon)

My heart was racing as they had Ryan, Erica and I stand in front of a room full of applause and Jennifer Endres, the Family Resource Manager, read the following:

"This year, our Giving Hope a Hand award is going to a group of people instead of just one person.

I’d like to ask Erica Robertson and Maren and Ryan Layton to please stand. These three, Erica, mother of Avery and Maren and Ryan, parents of Leah, along with 16 other people, trained for months for the 2013 Boston Marathon. Erica flew across the country from California and Maren and Ryan headed south from New Hampshire where they met their fellow team members—mostly for the very first time in person—to run on Monday, April 15th, 2013.

The Rett Community followed our team of 16 runners; we watched the posts on Facebook; tweets on Twitter, checked in on various blogs—we were watching, we were cheering for them and when we heard of the bombings near the finish line, we were terrified.

There was a period of time when we did not know who was safe—who had finished—who was almost at the finish line and we didn’t even want to think about who was actually at the finish line.

Slowly, our community came together alerting each other when they found out who was ok and who had reunited with their family members. After a few hours we knew that all 16 of our runners were safe and we were relieved.

These runners-- Erica, Maren, Ryan—along with the other runners on the team worked hard for months, training, raising funds for Rett syndrome research and creating awareness across the country. They, like the people of Boston and more importantly like the families affected by Rett syndrome, are strong, they are resilient and they will not give up on achieving their goal of crossing that finish line. We honor you and we thank you for giving hope a hand!"

Tears flowed down my cheeks as emotion from that day rushed over me. I remembered my elation to be running, my fear when I learned something was wrong, my relief as I found out Kate, Leah, Ryan's parents and everyone else we knew were all safe, my anger at not being able to finish. And then, sitting in a room full of people affect by Rett syndrome, I remembered once again the reason I was running in the first place. And it was an incredible and overwhelming feeling. 

We were asked to come to the front and Erica and I made Ryan speak so we wouldn't have to. I don't even remember what he said because I was so terrified and overwhelmed, but I remember thinking it was perfect. 

I am beyond honored to have been a part of this team and to have given even a sliver of hope to anyone affected by Rett sydnrome.