Run, Johnny, Run!

"I run today for Grace. And one day I know she'll run by my side."

It's just been just over a year since my brother sent me that text message. Last October, he ran his first marathon, the Marine Corps Marathon in Washington DC, in honor of Grace. It was part of the 1,000 miles he pledged to run for her that year.

Johnny after finishing the 26.2 mile New York City Marathon

Today, he finished his second marathon for her, this time in New York City. I'm so proud that he not only finished the 26.2 mile course in three hours and 33 seconds, but that he also helped to raise awareness for all the kids battling INAD.

Running has just never been my thing.  So, I truly admire those that run and train all the time for different events. From 5K races to 26.2 mile marathons, it takes a lot to get up off the couch and get moving.  And it's even more inspiring to see people run for Grace.

Earlier this year, when they were planning the Grace Filled 5K event, Johnny posted this quote to Facebook. "I run because I can. When I get tired, I remember those who can't run, what they'd give to have this simple gift I take for granted, and I run harder for them. I know they would do the same for me."

Johnny, and his wife Emily too, started running for Grace before we even knew INAD existed. They are a constant source of courage and inspiration to me through their efforts to raise awareness and funding for INAD.

Emily took these photos of Johnny along the course.

Their first race this year was the Cherry Blossom 10-mile in Washington DC. In celebration of Grace's favorite stuffed puppy named Bruce, they purchased a Bruce replica and have been running with him ever since.  After the 10K, they ran a 200-mile marathon relay from Gettysburg, PA to Washington DC with a 12-member team. Each friend lovingly carried Bruce along the route in honor of Grace.

And although they didn't actually run in the race, they organized the Grace Filled 5K event, which drew more than 700 runners and walkers all over the world.

They aren't the only ones to run for Grace either.  This spring, Kyle's high school friend, Kendal Elvidge and his family ran a marathon-relay in Champaign for Grace. And Kyle's Aunt Kim ran an Ironman course this summer. After the race she posted a photo of her medal and her Gracelet, and said Grace had really been an inspiration for her the entire route. In December, a group of local runners is also doing a marathon relay for St. Jude, and they chose the name "Grace-ful Runners" in honor of Grace.  That's one special little girl making a huge difference.

These photos are from the Marine Corps Marathon when Johnny went to cheer on Ainsley and her dad.

Last week, it was once again time for the Marine Corps marathon. As Johnny was running the course last year, he saw a sticker on a racing chair that caught his attention. After the race, he googled the logo, which turned out to be Ainsley's Angels of America, named in honor of Ainsley Rossiter, who like Grace, suffers from INAD. Her foundation was started to provide race chairs to give those who are unable to physically run a chance to participate in races. I got to share our story with Ainsley's mom and dad after we learned that Grace also had INAD.

Although Johnny didn't run the Marine Corps marathon this year, he did make his way to the course to cheer for some of the racers. This year, Ainsley's dad, who himself is a Marine, pushed Ainsley through the 26.2 mile course in what would be her 100th race as a captain. As they passed by where Johnny was standing, her dad came over to give Johnny a hug and gave him the bracelet off his wrist. I know it was a moment Johnny will always remember. 

Just one week later, it was time for Johnny's marathon, the 26.2 mile course through five boroughs in New York City, ending in Central Park on Nov. 1.  He texted me earlier this year and said he put his name in the lottery on a whim. His name was selected, and he joined 50,000 other runners in the streets of New York City.  Of course, Bruce came along for the ride.  Johnny carried him the entire length of the marathon.

He also had a custom made #beatINAD shirt and headband to help raise awareness for this very rare disease.  My sister-in-law sent periodic updates throughout the race on his progress, and my dad watched the route on his cell phone.  I would have loved to have been there in person, but it just didn't work out.

Grace and I made a sign to wish Johnny good luck on his race.

This is what he wrote after the race:

"A Grace-Filled Journey carried me through 5 boroughs and 26.2 miles in NYC for the #‎TSCNYCMarathon. There are too many people to thank for the coaching, motivation and inspiration, but you know who you are and your efforts helped me more than you'll ever know. The race is over, but the battle against INAD isn't. A marathon pales in comparison to the struggles Grace and a handful of other kids and their families battle every day. We must keep pushing and find a way to #‎beatINAD!"

I am so proud that our family and friends have taken up this cause in so many ways in Grace's honor. There are many times I struggle because my dreams for Grace may never come true. I listen to people talk about how their kids will be great athletes or straight-A students, and most days, I wish Grace would be able to tell me what she did in school that day. But that's my struggle, not hers. She makes her own path and changes the world in ways I could never even imagine.

Although Grace may never get to run by her Uncle Johnny's side, I know she makes a difference in so many lives each and every day. She teaches empathy, compassion, kindness and the importance of living every day to its fullest. And her beautiful smile shows that no matter what the future holds, the present is full of sunshine. And for that, I will always be grateful.

MLH