Gwendolyn DeBard Strong was born perfectly healthy October 4, 2007 following a picture perfect pregnancy. Her cry was faint in comparison to other newborns, but she fed immediately and passed all newborn screenings with flying colors. We proudly took her home to begin our new life as a family.
At 8-weeks-old, we began to notice Gwendolyn wasn’t reaching out for toys and she started to fuss through feedings. We met with our pediatrician for a routine check-up and we were immediately hospitalized. That morning, before the doctor’s appointment, Gwendolyn had been smiling and mimicking sounds, but by that night, while in the Pediatric Intensive Care Unit (PICU), she became completely paralyzed, could no longer smile, and was having difficulty breathing. Because she seemed to be a thriving baby, Gwendolyn was initially misdiagnosed with Infant Botulism, a serious but treatable illness. We spent a month in the hospital and Gwendolyn seemed to slowly, but steadily build up strength. We were hopeful. After three months of only moderate improvement, the simple Spinal Muscular Atrophy (SMA) DNA blood test was ordered. We now know that with the prevalence of SMA, the test should have been ordered the first day she had been hospitalized three months prior. In the weeks it took to receive the results of the test, we began to see the SMA symptoms in Gwendolyn. On March 31, 2008, just before her 6-month birthday, we received the results and the worst news any parent can learn — Gwendolyn had SMA Type I. Regardless of how long, our time with her would be tragically limited.
We quickly learned that we didn’t have much time to come to terms with her diagnosis. Gwendolyn’s SMA had progressed rapidly and she needed respiratory and feeding assistance immediately before it was too late. We spoke with many SMA specialists and within two weeks of her diagnosis, we traveled to Stanford, the nearest hospital with SMA expertise, to have the G-Tube with Nissen Fundoplication surgery for non-oral feeding, began using a BiPAP breathing machine, and learned how to administer respiratory treatments in the hopes of keeping her healthy for as long as possible. Gwendolyn spent another month hospitalized at Stanford, but with this new assistance she regained strength and we were able to take her home — this time to begin our life and journey with SMA.
It was during those difficult first few months that Gwendolyn showed us how very determined and spirited she is and how much she loves being part of the world! While she could never form words, she made it very clear that she wanted adventure, loved being social with other children, and wanted to do all the things able-bodied children love to do. Gwendolyn proudly attended preschool and eventually public elementary school where she had a beautiful inclusive experience. Her favorite activities included playing with friends, reading, PE, and dance class. She was always a dare-devil and went sledding, jumped in bounce houses, and loved anything that let her go fast. She loved music and regularly attended music class as a toddler and has been to multiple live theater performances (her favorites were Disney Playhouse Live, Yo Gabba Gabba and Sesame Street Live). She went to aquariums, museums, zoos, Disneyland and Sea World. She adored animals and had special encounters with many, including getting to touch a penguin and a baby fox, feed a giraffe and a dolphin, and had weekly visits with a miniature therapy horse named “Little Star.” She went to several national parks and we took her on a month-long 5,000-mile cross-country RV journey in June 2009 to meet her 104-year-old great-grandfather, having family experiences all along the way. She found a passion for running and, using a specialized wheelchair with Dad, completed three half-marathons and multiple 5Ks.
SMA never made any of this easy and we usually did things a bit differently, but we tried as hard as possible to give Gwendolyn the life that she wanted; full of rich experiences and surrounded by the love and support of family and friends. She has been our guide and continually let us know that SMA wasn’t going to stop her from living life to the fullest.
Gwendolyn passed away peacefully on July 25th, 2015. She was 7 years old and 9 months. And she will always be our NEVER GIVE UP.
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