Santa Barbara News-Press | November 13, 2011 | By Nikki Grey
They say they run so that one day those who can’t, can.
Although it takes strength, endurance, and dedication to run a marathon, runners on Team GSF say their sweat leading up to the Santa Barbara International Marathon was nothing compared to what it takes to provide care for a baby that has spinal muscular atrophy.
Representing Santa Barbara-based The Gwendolyn Strong Foundation, 30 runners raised more than $50,000 to spread awareness about the disease, as well as fund research for a cure.
The nonprofit foundation, which was established in 2009 and has raised nearly $1 million for its cause, is not just any organization working to combat a fatal disease.
Created by two Santa Barbara parents who were devastated when they realized a disease they had never even heard of would likely kill their daughter, the organization has spread its message and influence nationwide.
Bill and Victoria Strong say they are humbled by the efforts of the 30 runners to raise money to combat the disease that afflicts 4-year-old Gwendolyn.
“I think this is so powerful that people who can walk or run use their bodies so someday children who can’t, can too,” said Mr. Strong, a 35-year-old Internet entrepreneur.
According to the foundation’s website, spinal muscular atrophy is the No. 1 genetic killer of babies and young children. SMA is a degenerative illness that eventually hinders an individual’s ability to walk, stand, breathe, eat, and swallow.
Mr. Strong said that because of this disease, his daughter is essentially paralyzed and requires around the clock care to stay alive.
The mind, however, is never affected, said Mr. Strong.
“She’s just like any other kid,” he said. “We just try to give Gwendolyn the experiences of any other child. Although the disease is still terminal, her life is now, so we just try to live it that way and give her as many experiences as possible.”
Mrs. Strong, 34, said giving Gwendolyn the life she and her husband want for their daughter can be challenging, but there are always ways to make it work. An example is when Gwendolyn wanted to climb a tree with her preschool classmates. She was lifted into the tree.
Gwendolyn communicates with others, Mrs. Strong said, using her eyes. For “yes,” she rolls her eyes up, and for “no,” she blinks. When Gwendolyn is really excited, she rolls her eyes very fast, Mrs. Strong said.
Members of Team GSF participated in the marathon, half marathon and relay. They raised money mostly by asking friends, families and businesses to sponsor them for the event.
The third annual Santa Barbara International Marathon was Mr. Strong’s first marathon. He said the inspiration of running a marathon to raise awareness and funding for SMA research stemmed from when his friend Michael Paskin raised money for the foundation by participating in the Ironman triathlon in 2009.
Mr. Paskin said he is inspired by the strength the Strong family demonstrates every day.
“What they’re going through is so incredibly difficult and over the course of (Gwendolyn) suffering from SMA, I think it’s easier for some people to throw in the cards or just cope with the diagnosis,” Mr. Paskin said.” But Bill and Victoria have dedicated themselves to eradicating this disease.
“In light of all these obstacles, they still remain so positive, so motivated, and so inspiring,” he said.
Lauren Lundy O’Connor traveled from New York City to run in the marathon. She became passionate about finding a cure for SMA when her best friend’s son died from the disease a few years ago.
Ms. O’Connor, a second-grade teacher, said she connected with the Strongs on Facebook, became good friends with the family and has raised more than $20,000 for the foundation.
She said she is motivated by Gwendolyn’s strength — at 4 years old, Gwendolyn has already doubled the average life expectancy of a child diagnosed with SMA type I.
“Gwendolyn may be 4 years old, but she is my hero, because she is so strong,” Ms. O’Connor said. “She won’t stop fighting. She fights every day. That little girl has my heart.”
The Strong family has changed her perception of life, she said.
“Bad days aren’t really bad days. Every minute is really a gift and there are no guarantees. The way they give Gwendolyn the world teaches me not to take things for granted and to really appreciate the little things.”
While cheering on her husband and the rest of Team GSF at the marathon Saturday, Mrs. Strong was moved to tears by her team.
“The funny thing is they all want to thank us, but they are making a difference,” she said. “It’s easy to just say, ‘I’m really sorry,’ or ‘Their situation stinks,’ but they’re going to help change it and that’s incredible.”
Mrs. Strong stood with Mr. Paskin’s wife and Ms. O’Connor’s mother on the sidelines holding signs for their loved ones that read, “Team GSF” or “Never Give Up.”
The Strongs say they aim to make running the marathon an annual event for the foundation.
They hope to bring in more runners next year, which their supporters say they will have no problem doing. It seems they all have inspired each other.
“It would take an unbelievable amount of endurance to give Gwendolyn the quality of life they have and I think the group of us understand there’s a similarity there,” Mr. Paskin said.
Ms. O’Connor agrees. She said the Strong family’s dedication keeps her running. “I plan to run as long as I’m alive or until there is a cure for the disease, whichever comes first,” she said.
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