Our precious daughter, Gwendolyn DeBard Strong, passed away peacefully at home on July 25. She was 7 years and 9 months old.
Gwendolyn will always be our courageous butterfly. In her short life, Gwendolyn taught us more than we could have ever imagined possible for a child. She was wise, she was silly, she was true to herself, and she showed us how to be brave. Though devastated, we know we are so fortunate to have been able to give Gwendolyn so much, to have seen her so joyful, and to have experienced so much life with her. We are filled with gratitude for that time and the many people who came into Gwendolyn’s life to help us give her the world.
Gwendolyn was born October 4, 2007, at Santa Barbara Cottage Hospital. Though her first few months were very typical, at 3 months old she started having difficulty feeding and reaching out for toys. It took months for an accurate diagnosis, but at 6 months old she was diagnosed with spinal muscular atrophy (SMA) Type I. SMA is similar to ALS but occurs in babies. A degenerative disease, SMA eventually impacts every muscle in the body, hindering walking, eating, speaking, breathing … . SMA is terminal, and many children diagnosed with SMA Type I do not live to see their 2nd birthdays. But Gwendolyn had very different plans.
