A brief and uneventful existence was expected for Gwendolyn Strong after spinal muscular atrophy (SMA), known as baby’s Lou Gehrig’s disease, gripped her infant body. Bill and Victoria Strong had other ideas. Their daughter might never talk, walk, sit up, feed herself, or even breathe without assistance, but that would not stop them from exposing her to everything she could handle. That has turned out to be quite a lot.
“The prognosis was she wouldn’t see her second birthday,” Bill Strong said. “She turned 7 on October 4. She is so fragile but incredibly strong at the same time. She has a mountain of challenges and crises. So far she’s gotten through them. We take longer to recover than she does. We’re her greatest handicap.”
Gwendolyn has traveled with her parents in an RV across the country. She has been to Disneyland. She had her latest birthday party at a skating rink. She is one of the best readers in the 2nd grade at Washington School. Furthermore, she is an athlete, a runner. Maybe her legs can’t carry her, but she sees to it that her father’s legs do.
Bill got in shape to run the Santa Barbara Marathon in 2011 on behalf of the Gwendolyn Strong Foundation (GSF), a nonprofit organization that raises funds to increase awareness of SMA and support families impacted by the disease. After he did the race, he got the feeling his daughter felt left out. “We figured out that Gwendolyn didn’t want to be on the sidelines,” Bill said. “She wanted to be in the run.” In 2012, they both entered the S.B. Half Marathon. With Bill pushing her stroller, and Victoria and dozens of GSF team members running in their “Never Give Up” jerseys, Gwendolyn reached the finish line after two and a half hours on the road.
“She loves the thrill of racing,” Bill said. “She loves passing people. She doesn’t like to be passed.” It requires quite an effort on his part. Gwendolyn’s custom-made wheelchair weighs well over 100 pounds with all the equipment required to help her breathe and keep her fed and hydrated. “I looked at my daughter and thought she would give anything to trade places,” Bill said. “That kept me going.” Gwendolyn had become a celebrity at last year’s half marathon. Her favorite song, Katy Perry’s “Roar,” was played at the start. She and Bill trimmed 20 minutes off their time the year before.
They plan to go the distance for the third time on Saturday, November 8, at the sixth annual Select Staffing Santa Barbara Veterans Day Marathon & Half. This time, Gwendolyn will have the company of a girl rather like herself.
Sorel Kolendrianos, who will turn 9 the week of the race, lost her ability to walk, talk, or use her hands at 17 months because of Rett syndrome, a rare genetic disorder that targets girls. Her parents, Chris and Megan Kolendrianos, both ran the Boston Marathon — Megan in 2012 and Chris this year — in support of efforts to find a cure. They met the Strongs when both their daughters were in physical therapy. Chris will push Sorel, a 4th grader at Isla Vista School, in next month’s half marathon.
Their families, including Gwendolyn’s baby sister, Eleanora, and Sorel’s 5-year-old brother, Xander, posed before a training run last weekend. The girls reclined in adjacent strollers. Sorel, smiling under a baseball cap, sported new running shoes. Gwendolyn gazed steadily in her direction. Cameras took in the scene, which could have been a promotion for a showdown: Daughters Duel at 13.1 Miles! But the dads were not talking smack.
“I would bet on the Strong family,” Chris Kolendrianos said. He knew about Gwendolyn’s competitiveness. “She doesn’t even like me to stop for water when we’re racing,” Bill Strong said. Perhaps a song from Sorel’s playlist will send the girls off. Megan Kolendrianos suggested Meghan Trainor’s “All About That Bass.” There will be other music to their ears during next month’s run — the shouts of encouragement from spectators and race monitors all the way to the finish line at Leadbetter Beach.
Bill Strong is grateful his daughter has been given the opportunity to feed her lust for life with such an activity. “The Santa Barbara Marathon has been very supportive,” he said. “We are lucky to live here.”
There was another display of compassion in action last week when 108 bicyclists rode into town during a 620-mile journey to raise $1 million for the Challenged Athletes Foundation (CAF). The organization provides equipment, coaching, and competitive outlets for athletes like Aaron Loy, a UCSB lacrosse player who had both his lower legs amputated after contracting meningitis a year ago. The CAF has provided him with prosthetic racing legs.
Some of the challenged athletes participated in last week’s ride. Lance Weir, a paralyzed Marine Corps veteran, was able to operate the hand crank of a customized tandem bike. Loy greeted the riders last Wednesday morning in the parking lot of Fess Parker’s DoubleTree as they prepared for an 86-mile push to Santa Monica. He is back in school at UCSB. “I’d love to ride with you,” he said, “but I have a class at 10.”
Bill Walton, the basketball great and a longtime supporter of the CAF, put his arm around Loy and expressed a profound realization: “When the worst things in life happen to us, the possibility is that they ultimately become the best thing.”
The Strongs and Kolendrianoses can relate to that. The distressing condition of their daughters has brought out the best in them and in all the people who have offered their love and support. As Bill Strong said, “We’ve seen a side of humanity that I wish everybody could see.”