Our only child, Gwendolyn, just turned 5 years old. She’s never crawled, nor walked, nor taken a single step, and she has never spoken a single word. She never will: at least, not the way most of us do. But this November, she is running her very first half marathon — 13.1 miles in the Santa Barbara International Marathon (SBIM) — something she told us that she dreamed to achieve. My husband and I will be her legs to make her dream come true.
It has been a long and unexpected road to get to this point. While Gwendolyn seemed perfectly healthy at birth, by 6 months old, our babbling baby’s future looked extremely grim. “Take your baby home and love her; your time is very limited,” said the doctor who diagnosed Gwendolyn with the degenerative and terminal neuromuscular disease spinal muscular atrophy (SMA). We were told she had months, perhaps a year. That was five years ago.
Referred to as “childhood Lou Gehrig’s,” SMA has taken nearly every physical ability from Gwendolyn, and at this point, she’s completely paralyzed save for very slight movement in her fingers and wrists. She requires machines to help her breathe, eat, cough, and swallow and needs around-the-clock monitoring. Despite the physical toll, SMA does not impact Gwendolyn’s cognitive ability; it never will. And while Gwendolyn bravely faces a mountain of challenges every minute of every day, in so many ways she’s a typical 5-year-old who wants to be part of everything and refuses to watch life from the sidelines.
Over time, my husband and I have learned how to manage her medical care and navigate risks to give her the life that she demands. She’s an over-the-moon proud kindergartener attending Washington Elementary School. She has lots of friends and is most content when she is just one of the gang among her peers. Like many girls her age, her favorite color is purple, and she loves horses, princesses, and butterflies. She is always eager to try new things. She loves music and dancing. And recently she decided she loves to run.
Shortly after Gwendolyn’s diagnosis, we started a nonprofit in her name, the Gwendolyn Strong Foundation (GSF). It was our way of doing something: a vehicle for us to channel potential negative energy in a positive direction, our way of fighting alongside Gwendolyn and the thousands of other children battling SMA to help change the future of this brutal disease. Fundraisers of all sorts ensued, but our athletic friends quickly turned fitness events across the country into fundraising opportunities to support the work we were doing through the GSF — and soon nonathletes and complete strangers were joining in, too. They’ve run marathons, half marathons, 10Ks, and 5Ks. They’ve competed in triathlons and completed extreme endurance events like the Ironman and Western States 100 Mile Endurance Run. Coined “Team GSF” and branded with our “Never Give Up” motto, we were immediately struck by the poignancy that so many were challenging themselves physically to help the severely physically challenged. There is something deeply profound about people running for those who can’t.
Last year, my husband, Bill, ran the full marathon in the SBIM, and we were humbled to have 30 Team GSF runners with him in the event. It was his first attempt at any long-distance running — the first time he’d done any running since he literally sprinted home from work the day Gwendolyn’s SMA diagnosis was confirmed. Gwendolyn and I proudly supported him during his training and cheered him on at practice races throughout the year where Gwendolyn excitedly held “Go, Daddy!” signs. Watching him cross the SBIM finish line could not have been a more positive and emotive experience for us all. But something else happened that day. Gwendolyn made it clear to us that holding signs and cheering from the sidelines were no longer enough for her. She wanted to be out on the race course competing, too.
We would go to the edge of the Earth for her, so of course we will help her run … but how? We can’t just pop into a store and buy a jogging stroller. Gwendolyn’s needs are so specialized there are only a few companies in the world that make a wheelchair to support her positioning and life-critical machines, and none of them are built for long-distance running. But with the help of several wonderful people, we found a wheelchair, had it modified, and within a few months, had a way to run with Gwendolyn. Next up was to speak with the SBIM organizers to approve a 5-year-old in a wheelchair as an official competitor. Their answer, “There are exceptions to rules, and this is certainly one of them.” Gwendolyn was green-lighted! We were actually doing this! Her dream was to come true! Now that meant we had to actually run.
I had never run more than five miles in my life, hadn’t done any running in years, nor was it an ambition. And Bill would need to train to push Gwendolyn and her medical equipment (all 85-plus pounds) for 13.1 miles, including hills. We have spent months training — it is rarely easy. But then we see Gwendolyn’s feverish happy fingers tap-tap-tapping away at just the sight of her running wheelchair and a fresh perspective surrounds us. When I think of how hard running can seem to me, I remember what a gift running is. When I start to tire, I remember how lucky I am to have the ability to put one foot in front of the other. I remember that Gwendolyn is running the equivalent of a marathon every single day just to breathe — and she does it with unmitigated enthusiasm for life and a never-give-up attitude.
Every person we know is now involved in the race — they are either one of the 100-plus Team GSF members running with us or have donated to help us reach our goal of raising $50,000 for the Gwendolyn Strong Foundation. Businesses and individuals from around the country and right here in Santa Barbara have generously sponsored our team, and we are nearing our fundraising goal. And that means we can continue our focus of raising awareness of SMA, funding critical SMA research, creating technology to allow those with severe disabilities to access the world, and granting iPads to others with severe disabilities so one day perhaps they too can express their dream.
On race day on Saturday, November 10, you can bet that Gwendolyn will be decked out in official race gear; she will have her iPod playlist ready with princess music and Broadway show tunes, she will be sporting her new bright purple Nike running shoes that fit over her orthotics, and she will proudly wear her “Never Give Up” Team GSF race jersey — just like the more than 100 Team GSF runners who will be running with her!
Every runner has a story. This is Gwendolyn’s. And this may be the biggest day of her life. It’s not every day your dream comes true.