An extraordinary thing happened when Gwendolyn Strong went to school. She made perfectly ordinary friends.
Gwendolyn was born with Spinal Muscular Atrophy (SMA), a fatal, degenerative disease that affects all voluntary muscles. Her parents worried that a simple infection picked up at school could kill her. And they worried that no one would want to be friends with the little girl in the wheelchair.
“Going to a typical school that wasn’t for students with special needs, I was afraid if kids would accept Gwendolyn, which was the most important thing to her,” her mother, Victoria Strong told TODAY. “But also so fearful that parents wouldn’t necessarily want their children to get close to a little girl who we all know, with SMA, we are going to lose one day.”
But the children at Gwendolyn's school had some lessons to teach about love, acceptance and the power of friendship.
Strong described the last two years as a “beautiful, social experience.” She is “blown away” every Monday morning at drop-off when Gwendolyn’s classmates run over to talk about their weekends, “just like she’s everyone else.”
“They will look right into her eyes and ask, ‘Gwendolyn did you have a good weekend?’ Then they raise their hands, ‘yes’ or ‘no’ so she can respond with her eye movement,” explained Strong. “Yes? Did you go the zoo? And they end up having these long conversations in a natural way as friends.”
Diagnosed as a baby with Type-I SMA, Gwendolyn, now a second grader at Washington Elementary School in Santa Barbara, California, relies on around-the-clock medical care to keep her alive. A breathing apparatus is connected to a mask on her nose. A suction machine, which needs to be used 10 to 12 times a school day, prevents her from choking. Gwendolyn eats through a feeding tube and depends on a recumbent wheelchair. She is non-verbal and no longer has the ability to smile — but uses her eyes and sounds to communicate.
Like any 7-year old, Gwendolyn’s relationships have blossomed out of school too, particularly with her best friend Miabella Cyr, who shares Gwendolyn’s passion for American Girl dolls.
“Watching their friendship grow has been extremely heartwarming,” said Miabella’s mother, Kirsten Cyr, a nurse in Santa Barbara, California. “[Mia] has always wanted to visit the American Girl store and when we told her we would go this summer and she could bring one friend, she immediately said, 'Gwendolyn wants to go so badly.'”
In August, Victoria Strong and her husband, Bill, drove Gwendolyn to Los Angeles to meet Miabella and her mother for the “Girls' Day” outing — something Victoria said she never could have imagined, after Gwendolyn’s diagnosis, when doctors warned the Strongs that their daughter might not survive a full year.
“When we first started talking about SMA and that Gwendolyn wouldn’t live for a very long time,” Cyr said, “Mia was caught off guard. And when Gwendolyn was hospitalized last year, Mia was very concerned and made her a bracelet and card, like the other kids in school.” But one friend’s fragile health doesn’t seem to hinder the girls’ genuine bond.
Gwendolyn’s father, Bill Strong, admits he was torn about sending her to school, because picking up an infection there could end her life. But in the end, the Strongs decided that the one thing they could control for their child is how she gets to live now, with as typical a life as possible. “I can’t tell you how many families we’ve met now with children with SMA who have passed away,” said Gwendolyn’s father, Bill Strong. “And we know how fortunate we are to even have the opportunity to attend school.”
To reflect their daughter’s resilient spirit, the couple founded the Gwendolyn Strong Foundation (the GSF) to “fight alongside Gwendolyn,” creating an annual grant program to foster SMA research and helping to develop a unique iPad app for non-verbal patients.
According to the National Institute of Neurological Disorders and Stroke, SMA affects about 1 in 10,000 people and the prognosis is poor for babies with SMA Type-I. Most die within the first two years.
“While these children have normal immune systems, most Type-I parents are very concerned, especially during a respiratory season, about sending their kids to school because the they are so vulnerable,” said Dr. Kathryn J. Swoboda, a neurologist and director of the University of Utah’s Pediatric Motor Disorders Research Program. “Children like Gwendolyn are essentially walking around with ICU attached to them at every moment. They are 100 percent dependent on caregivers.” Families can’t keep SMA patients in a bubble, she explained, but some try to give their children at-home enrichment rather than school, watching educational videos for example.
“When you see Gwendolyn, you might assume she’s not cognitively typical either,” said Tina Barense, a Santa Barbara registered nurse who stays by Gwendolyn’s side during the school day and helps her participate with her peers. “But Gwendolyn is above average and was the first student in her class last year to recognize all the sight words.”
Last weekend, the Stongs did something many parents do: they celebrated their daughter’s birthday — with a "Frozen" theme, of course, and a cake and school friends and a glittery crown for the birthday girl. Reaching age 7 is a big deal for a child with SMA, and one of many milestones her parents are grateful to have experienced.
“Gwendolyn wants wonder and joy and the thrill of childhood,” says Victoria. “And that gives us courage, to know that when we no longer have her in our arms, she will have lived a life with friendships and learning and fun in spite of SMA. Her disease didn’t take everything from her.”
Jacoba Urist is a journalist in NYC, who covers health, education and gender issues. Follow her on twitter: @JacobaUrist