By Mia Groeninger
Gwendolyn Strong was born in 2007 and is the eldest daughter of Bill and Victoria Strong. At six months old, she was diagnosed with the terminal disease, Spinal Muscular Atrophy (SMA).
A treatment had not yet been discovered, but this did not change Gwendolyn’s love of life. Her mother, Victoria, described her as “a social butterfly.” As a child, all Gwendolyn wanted was to play with the other children as “just one of the kids.”
At the age of seven, Gwendolyn passed, but her memory lives on in the hearts of her family, as well as the entire Santa Barbara community. Victoria recalls witnessing how accepting and inclusive children can be, as other kids always helped Gwendolyn lead as normal a life as possible. However, the Strongs realized that a lack of inclusive, communal spaces limited the opportunities for children of all backgrounds to come together.
“Never Give Up” became their family mantra, as they spent countless hours in the hospital, caring for Gwendolyn. Through their fierce love for her, Victoria and Bill worked hard to build their daughter the life she deserved. The time of her diagnosis and the year following was a challenging time for the family; the unpredictability of not knowing what would happen to their daughter was painful. She almost died many times that year. “Never Give Up” became the symbol of their strength, grit, and resilience amidst these hard times.
Bill, Victoria, and Gwendolyn Strong (courtesy photo)
Victoria shares, “We wanted to wrap ourselves in these words of courage.” So, they created merchandise, starting with a simple “Never Give Up” t-shirt and going on to expand the online store. Their fundraising efforts have been organic, beginning from the time Gwendolyn was in the hospital. Her life inspired her parents to advocate for others with SMA and fund research and projects to create a kinder, loving, empathetic, and inclusive world.
One in 10,000 people are affected by SMA. The Strongs began advocating for newborn screening in order to catch the disease early on, but no one would fund it. They made the first large investment in the screening, which is now saving lives all over the world. The Gwendolyn Strong Foundation’s most significant accomplishment thus far has been funding cutting-edge research to develop a potential cure for SMA, which is a FDA approved gene replacement therapy given at birth for patients.
Gwendolyn’s story and her parent’s love and passion for the cause has inspired many in the Santa Barbara community. Their fundraising began with merchandise, races, and other grassroots efforts. They encouraged others to make a difference in support of their cause. They believed if twenty families could raise $5,000 each, then they could begin funding critical research. It was a completely collective effort. Victoria describes this experience as “incredible to be a part of.” Santa Barbara is a community built on love and support and is truly rallying behind them.
The foundation’s major focus today is on the development of an all-inclusive playground in Santa Barbara, “so all children in Santa Barbara have the opportunity to be just one of the kids.” The playground plans have been approved, and the city donated the land, as well as the infrastructure. “Everyone is so supportive of the project,” Victoria exclaims.
Rendering of Gwendolyn’s Playground (courtesy)
Now, they are honing in on construction drawings and fundraising, with $4 million dollars raised and $2 million to go. Hopefully, they will be able to break ground around this time next year. If $1 million is raised at the Butterfly Ball, this would be a giant step forward for the playground’s timeline.
This year’s annual Butterfly Ball will be held on Saturday, November 12th. The festivities will begin at 5pm, including cocktails, dinner, dancing, and an auction at the Dos Pueblos Ranch. One hundred percent of the proceeds from the event will go towards funding the Gwendolyn Strong Foundation’s all-inclusive playground in Santa Barbara.
Bill and Victoria Strong are two incredible people who truly did “turn pain into purpose.” Their endurance and perseverance have made a difference in the world. Doctors told them, “You have maybe a few months. There is nothing you can do.” Victoria said, “I think at our core we both believe that there is always something to be done.” With this faith and hope, came groundbreaking research, advocacy, and a stabilizing support system. “Never Give Up” has given them courage to push forward and “cultivate what sparks falling in love with being alive.”
Donations to the Gwendolyn Strong Foundation can be made here.
Mia Groeninger is a student at Cate School and an intern at edhat.com