Sometimes we are presented with opportunities to meet and hear stories from truly extraordinary humans; people shaping history and changing the course of life for many others across the globe. This month’s Rebel Story features a true Rebel Soul, Victoria Strong - a name most fitting for her character. Victoria is a mother, writer, activist, and powerful changemaker on a global level. It is through her moving words that we are left with the powerful reminder that everyone harbors a capacity for greatness…often we are simply unaware of this power until it is summoned from deep within us. It is with deep respect and humility that we share her courageous story of just how inspiring and powerful one precious life can be.
We met with Victoria Strong at the Dwight Murphy Field, a small park, nestled between the Santa Barbara Zoo and East Beach. It is unremarkable in its current state but will be the future home of an All Inclusive Playground that she and her foundation have been busy planning with the City of Santa Barbara’s Parks and Recreation Department for two years now. “Not only will this space be accessible and inclusive for all to play, our vision is a whimsical playground unlike anything in this community to spark curiosity and delight for every age.” Appreciating the true immensity of this story requires us to take you back to its inception.
For Victoria Strong, October 4th, 2007 was a day filled with joy, love, bliss, and celebration. On this day, Gwendolyn Strong was born to a true warrior, change maker, and champion. A typical pregnancy, a typical birth, a beautiful baby girl - a miracle. There was no reason to suspect what was to come next.
Around three months old, Gwendolyn began to show signs of illness. She was hospitalized and misdiagnosed until she was five and a half months old. During our emotional interview with Victoria, we learned that it was ultimately a blood test that confirmed baby Gwendolyn was suffering from the most severe form of Spinal Muscular Atrophy (SMA). SMA is a crippling disease that syphons physical strength by affecting the motor nerve cells in the spinal cord, robbing the individual of any ability to ever walk, eat, or breathe self-sufficiently. Labeled a common-rare disease, SMA was once the number one genetic cause of infant death - until the Strong Family helped to change that.
When Victoria and her husband, Bill, were initially in the hospital with Gwendolyn, they learned that because SMA is a rare disease, it received very little government funding. This meant that even though there were researchers willing and eager to study SMA (and a real need for further research), there was very little money being granted to them; seriously impinging progress toward a deeper understanding of the disease and any treatment. They began efforts to raise awareness for SMA and momentum for the legislation already making its way through government (albeit, lacking traction and backing-up until this point).
“It’s really devastating to learn that your cute, chubby little baby…(sobs)...is going to die...you are going to have to watch any ability she has, including her smile, disappear and you can’t do anything…"
Quickly, Victoria and Bill aggregated over 100,000 signatures in support of their efforts. Even taking it so far as to analyze demographic data from supporters that divided each one into a district; giving Victoria and Bill leverage to take to senators in those districts and engage in dialogue over SMA and its importance to constituents. The success of these initial efforts left them vibrating…empowered and ready to accept the challenge upon them.
“Giving Gwendolyn a full life was priority number one…"
Gwendolyn’s care was a full time job and Victoria and Bill’s number one priority. Although severely disabled, Gwendolyn, had an active mind and was bursting with a desire to live and experience the world. She seemed to know her purpose before anyone else did. “She had a magnetism about her,” She wanted to get out, to meet people, to spread her infectious energy. So Victoria and Gwendolyn started a blog where they would write and share about her life. Gwendolyn was the driving force behind being active and connected. She wanted to go for walks, play with friends, read books, she insisted on going to preschool, and eventually even participate in three half marathons! She was unique, one-of-a-kind…a unicorn. The type that goes to an American Doll store for a “looks like me doll”, chooses a doll identical to her, with both a runners outfit and a wheelchair. “That was who she was. She just embraced herself.” So, naturally she’d be the one to spearhead the Gwendolyn Strong Foundation (GSF).
“She had this magnetism...People from literally all over the world were just drawn to her…”
Armed with a strong sense of purpose and a will to execute, Gwendolyn and her parents tirelessly constructed the foundation and her connection to the world over the next 7 years until Gwendolyn heartbreakingly lost her battle with SMA. Victoria - strong and steady - continues to advocate and manage the GSF today and mentioned how she never could have carried on without the love and support from her husband, Bill, as well as all of the GSF supporters and the Santa Barbara Community. “Our intention was not to save Gwendolyn’s life, I mean obviously I would have loved to have done that…...But we didn’t give ourselves that false hope because it just seemed so far out of reach but we knew her life had a purpose and that she had this magnetism and for whatever reason people donated, people rallied around her and we knew it was what we needed to do to channel that energy into helping future generations.”
Incredibly, the foundation helped fund over 20 research programs across the world; one gene therapy program in particular is making its way through the FDA and is a “very real cure…if given at birth, it’s a miracle.”
Having lived so much in such a short time, it was Gwendolyn’s courage and resolve that became the inspiration for the Accessible Playground; a space designed to be all inclusive for children and adults of every ability, a place reflective of the kind of wild and adventurous spirit their remarkable daughter would have loved.
“When we were first approaching this we knew we wanted to think outside the box. We want to create a truly inclusive space that is not only wheelchair accessible but is also comfortable for those with sensory disorders and all types of abilities. The vision is a place unlike anything that we have in Santa Barbara. We are really excited because on a personal note, this is so Gwendolyn and it’s the perfect way to honor her memory and then also, we are excited to give back to the community that gave us so much.”
The cure came too late for Gwendolyn and many other children before her. However, because of them and because of the vigorous efforts of those that love them, her legacy will be felt for years to come in the laughter of the children she saved; their imaginations running wild on the playground she inspired...right here in the heart of sunny Santa Barbara.
Inspired by this story, we'd like to challenge you to celebrate the warrior within yourself! Shop our Warrior collection and wear your warrior loud & proud.
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