Classmates Rally Around Seven-Year Old Girl With Fatal Degenerative Disease

National   |   Sarah Zagorski   |   Oct 10, 2014   |   2:37PM   |   Washington, DC

Seven-year-old Gwendolyn Strong has Spinal Muscular Atrophy (SMA) Type I, which is also known as Werdnig-Hoffman disease. SMA is a disorder caused by an abnormal or missing gene and causes weakness and wasting of voluntary muscles in the arms and legs.

gwendolynUsually, SMA is evident at birth or within the first few months after birth. Common symptoms include floppy limbs and trunk, feeble movements of the arms and legs, swallowing difficulties, a weak-sucking reflex, and impaired breathing. Sadly, according to the National Institute of Neurological Disorders and Stroke, the majority of babies diagnosed with SMA Type 1 die from respiratory failure within the first two years. In Gwendolyn’s case, her parents Victoria and Bill Strong were told she might not survive her first year.

However, Gwendolyn is a survivor and just turned seven last weekend. She even goes to school like the majority of children her age. At first, Victoria worried about her daughter attending a regular school. She said, “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.”

But to her surprise, Gwendolyn’s classmates at Washington Elementary School in California totally accepted her and embraced her as a friend. On Strong described the last two years as a “beautiful, social experience.” She said 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.”

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Gwendolyn’s parents also worried that no one would want to be a friend to the girl in a wheelchair. Now, she has lots of friends and even a “best friend ” named Miabella Cyr. Miabella’s mother, Kirsten Cyr, said, “Watching their friendship grow has been extremely heartwarming. 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.”

Even though Gwendolyn relies on around-the-clock medical care, she has been able to have a bit of normalcy in her life by attending school. Gwendolyn is connected to a breathing apparatus and uses a suction machine to prevent her from choking. And as her disorder has progressed, she has become non-verbal and no longer has the ability to smile. But Gwendolyn still uses her eyes and sounds to communicate.

Despite these difficulties, her parents feel blessed to have another year with their daughter. Victoria concluded, “Gwendolyn wants wonder and joy and the thrill of childhood. 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.”