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.
Over time SMA took most of Gwendolyn’s physical abilities, but her clever mind and social personality were never impacted. And despite her many challenges, Gwendolyn was determined to never let SMA define her. We drew strength from Gwendolyn. She taught us acceptance. She reminded us that life doesn’t stop at a heartbreaking diagnosis. She showed us there is always a way to tackle the seemingly impossible, to embrace the present, and wake up joyful each day ready to take on new adventures.
The obstacles SMA created were daunting, but seeing Gwendolyn’s eyes light up pressed us forward. And Gwendolyn was always eager. Simple walks to the park soon led to family outings all around Santa Barbara. Sledding at the Santa Barbara Zoo led to roller skating, ice skating, and even surfing. Vacations throughout California led to an adventurous 5,000-mile cross-country RV road trip to meet her 104-year-old great-grandfather and extended family. Disneyland with her best friend became an annual princess event. She loved to run and excitedly completed three half-marathons with her parents and friends. Playdates with her PEP baby group led to preschool, and eventually Gwendolyn had the gift of attending three years of typical elementary school.
Gwendolyn’s disabilities created a unique set of challenges to having such a big life full of experiences. Throughout our journey we have witnessed incredible kindness and generosity in the Santa Barbara community and beyond. Some fell in love with our little girl and became part of our family, helping care for Gwendolyn on a deep, personal level. Others were complete strangers, sometimes anonymously, selflessly helping to give Gwendolyn access to an experience or make our lives a little easier. Gwendolyn seemed to always bring out the best in people.
Without a doubt, the highlight of Gwendolyn’s life was attending Washington Elementary. This past year she soared through 2nd grade, excelled academically, and thrived socially. The Washington community fully embraced our little girl and provided an environment where Gwendolyn was just one of the kids. They saw Gwendolyn for Gwendolyn. For what she could do, not for her challenges. And for the silly, smart, incredible person she was. She developed deep friendships, bonds that became one of the most fulfilling parts of Gwendolyn’s life. She and her friends would read together, dance together, sing together, and just be typical children together. It was a truly beautiful thing to witness.
Gwendolyn’s fierce determination inspired us to start the Gwendolyn Strong Foundation to fight alongside her and make a difference for others. Dedicated to SMA research, advocacy, awareness, and support, theGSF.org has made material advancements in all categories because of Gwendolyn. She always proudly identified with the foundation’s NEVER GIVE UP mantra and loved seeing others wearing her T-shirts.
Gwendolyn defined “Never Give Up” — even in her passing. She was simply ready. Gwendolyn passed peacefully at home surrounded by love. It’s what we’d always hoped for her. In true Gwendolyn fashion, even her death was on her terms. If death can be beautiful, our brave little girl accomplished just that.
A public memorial celebration of Gwendolyn’s life will be held on Sunday, August 2, at 3 p.m. at Trinity Episcopal Church, 1500 State Street in Santa Barbara.
In lieu of flowers, we ask that you make a tax-deductible donation to the Gwendolyn Strong Memorial Fund (GwendolynFund.com), created as part of the Gwendolyn Strong Foundation. Check donations can be made out to “Gwendolyn Strong Foundation” and mailed to 27 West Anapamu Street, Suite 177, Santa Barbara, CA 93101. We plan to do something very special to honor Gwendolyn’s legacy.