This year, for the first time, we will have a Run For Our Sons team participating in Disney’s 5K race, which allows runners to push someone in a wheelchair or stroller. Sam’s mom, Kris a first time runner, told us that the whole family will be participating this year.
“This whole experience of training for Disney and fundraising for PPMD has been very empowering to us. Thank you for adding the 5K as one of your races at Disney this year. This makes it possible for our whole family from grandparents to younger siblings to be part of this experience. Even Sam’s 3-year-old sister will be donning her RFOS t-shirt as she runs her first race (100 yard dash). Most importantly, Sam can participate as I push him through the race. I am not a runner but I will do everything I can to help Sam finish the race. For me, in a way, this race is a metaphor on life as a mother of a precious boy with DMD. I may not feel completely equipped, or know exactly where the road is going to lead us, or what potholes are going to try to trip us up, but I know that I love my son and I will do ANYTHING to help Sam navigate through life.”
Sam is a confident and motivated young man. He understands what having Duchenne means and that it has limitations, but as you’ll read, he doesn’t dwell on that.
We spoke to Sam as he prepared for last weekend’s race.
Hi Sam and thanks for being our first Featured Voice! Tell us a little bit about yourself, what grade are you in and what do you like studying? What do you want to be when you grow up?
I’m in fourth grade and I like science. I want to be a zoologist and study animals because I am an animal lover.
What’s your favorite thing to do when you’re not in school?
I like to play video games, draw/color, and watch TV and movies.
Are you excited about participating the Disney 5K with your mom and the rest of your family?
I'm excited about the race because I get to be with my family and win a medal. I feel happy, special, and lucky that I have a family that loves me.
Have you been to Disney before? What’s your favorite part of the park? Which ride?
Yes, I have been to Disney before because I'm lucky to live in Florida. I like all of Disney except the princesses! Splash Mountain is my favorite because of the big splash at the end.
What do you tell people when they ask you why you use a wheelchair? What does Duchenne mean to you?
I use a wheelchair because my muscles are weak and I can't walk long distances. DMD means that I have weak muscles and bones and I can't do some things like other kids. That's all I have to say about that.
Okay, well we’ll let you get back to prepping for your trip, but we have one last kinda fun question for you. If you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?
Wow that would be quite an amazing dinner! Thanks Sam, and best of luck to your team at Disney!
Will Nolan, Communications Director
Read more PPMD Staff Blogs