02/28/2021
Today is . Gwendolyn is our rare & beautiful love. 💜 Gwendolyn DeBard Strong was born seemingly healthy following a picture perfect pregnancy. Her cry was faint in comparison to other newborns, but she nursed 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, Gwendolyn caught a little cold and we began to notice she wasn’t reaching out for toys and started to fuss through feedings. We met with our pediatrician and were immediately hospitalized. That morning Gwendolyn had been smiling and mimicking sounds, but by that night while in the Pediatric Intensive Care Unit 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 and treated for Infant Botulism. We spent a month in the hospital, never leaving her side, and Gwendolyn seemed to slowly build up strength. We were hopeful. After three months of only mild improvement, the simple Spinal Muscular Atrophy (SMA) blood test was ordered and, just before her 6-month birthday, we received the devasting news that 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 during that misdiagnosis time and she needed respiratory and feeding assistance immediately before it was too late. We spoke with every SMA specialists in the world and within two weeks of her diagnosis, traveled to Stanford, the nearest hospital with SMA expertise, in the hopes of keeping her healthy for as long as possible. Gwendolyn spent another month hospitalized at Stanford, but with new feeding, breathing, and respiratory assistance she regained strength and we were able to take her home -- this time to begin our life and journey with SMA. And what a beautiful life we created together! 💜
What is your rare + beautiful story?
