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Gwendolyn’s Story

May 01, 2011 by Victoria Strong
Gwendolyn’s Story

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 cannot form words, she makes it very clear that she wants adventure, loves being social with other children, and wants to do all the things able-bodied children love to do. Gwendolyn now proudly attends elementary school where her favorite activities include playing with the other children, reading, and dance class. She is a dare-devil and has been sledding, jumped in bounce houses, and loves anything that lets her go fast. She loves 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 has been to aquariums, museums, zoos, Disneyland and Sea World. She adores animals and has had special encounters with many, including getting to touch a penguin and a baby fox, feed a giraffe and a dolphin, and has weekly visits with a miniature therapy horse named “Little Star.” She has been 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' has a passion for running and, using a specialized wheelchair with Dad, has completed two half marathons and multiple 5Ks.

SMA doesn’t make any of this easy and we usually have to do things a bit differently, but we try as hard as possible to give Gwendolyn the life that she wants; full of rich experiences and surrounded by the love and support of family and friends. She has been our guide and continually lets us know that SMA isn’t going to stop her from living life to the fullest.

Frequently Asked Questions:

The Beginning

A Typical Day in the Life of Gwendolyn

Gwendolyn’s Machines

Respiratory Routine

Our SMA Resources

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