About Gwendolyn DeBard Strong

Our lives forever changed on the day our beautiful baby was diagnosed with Spinal Muscular Atrophy (SMA) Type I. And while a terminal diagnosis never becomes easy, we know we have been enormously blessed with time to get to know our little girl. On our journey with her, we have learned more about living and loving by truly cherishing each and every second we have left with her.

Our daughter, Gwendolyn DeBard Strong, was born perfectly healthy October 4, 2007, weighing 6lbs, 9oz. Her cry was very quiet in comparison to other newborns, but she fed immediately and passed all newborn screenings with flying colors. At 8 weeks old, we began to notice she wasn’t reaching out for toys and she started to fuss through feedings. A few days later, we met with our pediatrician for a routine check-up and we were immediately hospitalized. That morning, before the doctor’s appointment, she 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. While in the PICU, she was initially misdiagnosed with Infant Botulism, a serious but treatable illness. Because Gwendolyn had been a thriving baby and seemed to suddenly plummet, SMA did not seem to clinically fit her symptoms.

For the next three months, Gwendolyn received physical therapy and occupational therapy at home and we saw a local neurologist and her pediatrician weekly. Gwendolyn seemed to slowly, but steadily build up strength. We were hopeful. After three months of only moderate improvement, the simple SMA DNA blood test was ordered. We now know that with the prevalence of SMA, the test should have been ordered the first day we were hospitalized. In the weeks it took to receive the results of the test, we really 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 realized that she had been telling us all along. Each time she woke in the night, it was not because of “typical baby behavior”, it was because she could not breathe. Each time she cried while sitting upright in her car seat and smiled while flat on her changing table, it was not because she overly enjoyed her diaper changes, it was because being on her back allowed her to swallow and breathe more easily. And her quiet cry, though sweet to us, was a classic sign of SMA.

We also quickly learned that we didn’t have much time to come to terms with her terminal diagnosis. Gwendolyn’s SMA had progressed and she needed respiratory and feeding assistance immediately before it was too late, before she became too weak to endure the G-Tube surgery that would allow her to eat, before she suffered a severe choking episode that lead to a collapsed lung, pneumonia, or worse. We spoke with many SMA specialists on the phone and via email and within two weeks of her diagnosis, at 6-months-old, we traveled to Stanford, our nearest hospital with SMA expertise, to have the G-Tube with Nissen Fundoplication surgery for non-oral feeding performed, to begin using a BiPAP breathing machine, and to learn how to administer respiratory treatments, including nebulizing, chest percussions, Cough Assist, and oral and nasal suctioning. With this assistance, Gwendolyn no longer woke in the night in distress.

Very shortly after Gwendolyn's SMA diagnosis in March 2008, we made two vows:

1. We were going to cherish - really, truly cherish - every single second that we had left with Gwendolyn, and
2. We were going to stop at nothing to provide Gwendolyn with the highest quality of life possible and try as hard as humanly possible to give her, and us, as many family experiences as time and the circumstances would allow.

SMA does not always make this easy. Our lives have changed drastically because of Gwendolyn’s severe disabilities, the logistics of her machines and respiratory treatment routine, and the danger of exposure to germs. But, we do our best and believe Gwendolyn has a wonderful quality of life. She has been to aquariums, museums, and zoos. She has touched a penguin, a baby fox, fed a giraffe, held a sea cucumber and a starfish. She has seen a Disney Playhouse Live performance and adores her weekly music class. She had a huge first birthday celebration and has been to many parties with friends her age. Most importantly, Gwendolyn is surrounded by constant love and care.

Gwendolyn is a happy little girl with a fighting spirit. In her short life, she has already experienced enormous medical challenges, yet comes through them with a smile. She continually inspires even the most seasoned medical professionals. And although she does not move as freely as other babies, her mind is active and eager for stimulation and she is a bright and social little girl. SMA has changed our lives forever, but Gwendolyn has made us better people.