“This morning our courageous butterfly peacefully left this world,” Gwendolyn Strong’s parents wrote on their foundation’s Facebook page Saturday afternoon.
Gwendolyn Strong, a girl who captured readers’ hearts with her remarkable determination to be a regular second-grader despite having Spinal Muscular Atrophy (SMA), a degenerative disease that affects all voluntary muscles, has died. She was 7.
While Gwendolyn was non-verbal and lost her ability to smile, she used her eyes and sounds to communicate with everybody she met.
“Gwendolyn taught us more than we ever could have imagined possible for a child. She was wise, she was true to herself, and she showed us how to be brave… Gwendolyn defined ‘Never Give Up' even in her passing. She was simply ready,” her parents said.
Diagnosed as a baby with Type-I SMA, Gwendolyn relied on around-the-clock medical care to keep her alive. A breathing apparatus was connected to a mask on her nose. A suction machine, which needed to be used 10 to 12 times a school day, prevented her from choking. She ate through a feeding tube and was dependent on a recumbent wheelchair.
Her parents worried that a simple infection picked up at school could kill her. And they worried that no one would want to befriend the little girl in the wheelchair.
“I was afraid if kids would accept Gwendolyn, which was the most important thing to her,” Gwendolyn’s mother, Victoria Strong told TODAY. “But also so fearful that their 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 something extraordinary happened at Washington Elementary in Santa Barbara, California — Gwendolyn made perfectly ordinary friends and classmates treated her like everybody else.
She had a best friend, Miabella Cyr, who shared her passion for American Girl dolls and chose Gwendolyn as her travel companion for her special trip to the Los Angeles American Girl store.
Gwendolyn celebrated her 7th birthday — a huge milestone for SMA families, one of many the Strongs are forever grateful to have shared with their daughter — like so many little girls do, surrounded by friends at a "Frozen"-themed party.
Her mother described the last two years in school as a “beautiful, social experience,” and said she was “blown away” every morning when Gwendolyn’s classmates would run over to talk about their weekends.
“They will look right into her eyes and ask, ‘Gwendolyn did you have a good weekend?' They raise their hands, ‘yes’ or ‘no’ so she can respond with her eye movement,” explained Strong last October. “'Yes? Did you go to the zoo?' And they end up having these long conversation in a natural way as friends.”
SMA affects about 1 in 10,000 people and prognosis is poor for babies, according to the National Institute of Neurological Disorders and Stroke. Most children with SMA Type-I die within the first two years. Currently, there are no approved treatments for SMA and 1 in 50 people — about six million Americans — are carriers of a defective SMN1 gene, which causes the disease and can be detected by a blood test. Most recently, ISIS pharmaceuticals reported promising data from a phase II trial of a drug that could help SMA Type-I infants. The drug is still in trials, with results anticipated by 2017.
To reflect Gwendolyn’s resilient spirit, her parents founded the Gwendolyn Strong Foundation, with an annual grant program to foster SMA research and to help develop a unique iPad app for non-verbal patients — something that could make it much easier for children like Gwendolyn to attend non-special needs schools.
“I can’t tell you how many families we’ve now met with children with SMA who have passed away,” said Bill Strong. “And we know how fortunate we are to even have [had] the opportunity to attend school.”
“Our hearts ache and we miss our little girl,” Gwendolyn’s parents told TODAY. “But we are comforted knowing that through her entire life, Gwendolyn lived it on her terms in a big way. She pushed herself constantly and encouraged us to find a way for her to live fully. And along the way, we have met incredible people who fell in love with our little girl and helped us give her the world.”