Running Miles for Miles: How One Dad is Taking on NYC for the EB Community

This November, Malcolm Stewart will take on 26.2 miles at the TCS New York City Marathon as a proud member of #TEAMDEBRA, carrying with him the spirit of his son Miles who lives with Epidermolysis Bullosa (EB).  

Malcolm is no stranger to running through pain with purpose. A lifelong athlete, he ran the 2018 Chicago Marathon in honor of his late mother, and now, he’s channeling that same fierce love for his son and the entire EB Community.  

Here’s what Malcolm had to say: 

1) Can you tell us about Miles- his personality, what makes him smile, and what you admire the most about him?

Miles has been a warrior since he was born. He endures so much pain daily, but in the end, he still has a smile on his face. From a day-to-day perspective, he’s always smiling and just a fun boy.   

2) How has EB changed the way you see resilience and even everyday challenges?

I’ve been quite resilient in my life, so he was born into a perfect situation. Although his challenges are physical, I have a lot of experience having to endure pain and suffering in my early childhood.

3) You ran the Chicago Marathon last year and now you're training for the NYC Marathon. What inspired you to lace up again for TEAM DEBRA?

The first marathon was in honor of my mother who passed away from cancer, so I ran Chicago ’18 with the American Cancer Society. With Miles having this condition, it was only fitting to run with DEBRA. I’m glad to bring more awareness around this condition and for people to get early testing to support the cause.   

4) What was going through your mind at the starting line in Chicago last year? What about the finish line?

I can’t believe I’m going to do this again, a lot of tears throughout the race. As an athlete for 30 years. Running for my mother and now my son is much more meaningful than anything I’ve ever accomplished athletically. Finishing the race was exhilarating and purposeful. 

5) What does it mean to you to represent Miles and the EB Community at the largest and most iconic marathon in the world?

It means a lot to me to represent my son in an Abbott World Marathon Major. Losing both of my parents at such a young age, I know one day he will look back on these memories and appreciate all the Love and support he has for his condition. He will be a walking testimony someday to a kid or family dealing with this condition who has lost hope and given up.   

6) What parallels, if any, do you see between marathon training and the EB journey?

Resilience, grit, perseverance, and all that you endure through all 26.2 miles. The physical, mental, spiritual, and emotional toll it takes to complete such a race, which only .01% of the population completes in their lifetime.   

8) What would you say to another parent who is considering joining TEAM DEBRA but feels intimidated?

Sometimes it’s not about us, but the lives we impact through giving and using the skills to build awareness and support for others. Yes, running can be intimidating, but you run 1 mile at a time, one foot in front of the other. Just like our EB babies; just keep showing up and trying to get better one day at a time.    

9) What does crossing the finish line in New York this year symbolize for you?

Perseverance! All that our family endured the first year of my son’s life, all the ER visits, skin wounds, cries at night, watching him suffer. Our family is blessed that much more to have Miles in our life, although we may cry at night, there is Joy that awaits us in the morning. The battle of EB will be defeated once and for all.  

10) If you could share one message with supporters cheering you on, what would it be?

Your Love, Kindness, Support matters, and got me through the finish line. Thank you for being part of the finish line with me. I may run the miles, but we’re crossing the line together. One cure at a time.   

Malcolm's miles are fueled by love: for Miles, for the EB Community, and for the hope of one day finding a cure. Help us carry him across that finish line by donating toward his $5,000 fundraising goal here.

If Malcolm’s story sparked something in you and you’re ready to put your own miles toward debra’s mission, we’d love to have you on the team! Explore all #TEAMDEBRA Endurance Events