When Victoria and her husband Bill learned their daughter was diagnosed with spinal muscular atrophy (SMA), a paralyzing and terminal illness, they knew more had to be done to fight this devastating disease. SMA is the #1 genetic killer of young children. There is currently no cure or treatment for SMA, but researchers are very close. Victoria and Bill founded The Gwendolyn Strong Foundation, a 501(c)(3) nonprofit organization, to provide awareness and education of SMA and raise funding for research. In fact, Alpha Chi Omega sisters recently came together online to help The Gwendolyn Strong Foundation win $100,000 from Chase Community Giving.
Alpha Chi Omega is proud that Victoria Strong is one of its real, strong women, and that every ounce of her energy goes toward the cause closest to her heart, her daughter Gwendolyn.
Why she’s real:
When my daughter, Gwendolyn, was 6 months old she was diagnosed with SMA. SMA is degenerative and terminal, often referred to as the ALS-Lou Gehrig’s of babies, and eventually impacts every muscle in the body, including the ability to sit, eat, swallow, and breathe. The mind is never impacted and children with SMA are bright and social. There is currently no treatment or cure. Gwendolyn’s SMA diagnosis came as an enormous shock, was completely unexpected after a normal pregnancy and birth, and has been utterly devastating. The seriousness of her diagnosis has forced me to be truly real and honest about what is important…my daughter’s happiness. I try not to get bogged down in the things I cannot control and instead focus on what I can do to create a well-rounded full life for Gwendolyn, how fortunate I am to have her in my life, and what I can do to change the future of this cruel disease. Time with my baby is precious and I refuse to waste it being paralyzed by grief.
Why she’s strong:
Watching as my happy babbling baby degenerates and being utterly helpless to stop it has spurred a fierceness within me that was previously unknown. I have pushed myself well beyond my comfort zone, doing things I never imagined, but I refuse to simply wait for the inevitable. My husband and I started our Foundation to fight alongside our daughter who fights valiantly for her life every day. In our first year, we have raised $400,000 for SMA research and awareness, reached millions of new people with our unique Twitter and Facebook campaigns, and lobbied Congress to support SMA legislation through our successful online petition. While I know our efforts will most likely not be in time to save Gwendolyn’s life (she has already lived well beyond what was expected), I firmly believe one person can create change and I want to help ensure that future families do not have to face the agony of an SMA diagnosis.
Favorite quote:
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.” ~Margaret Mead
Favorite book:
Lately it is what I read with my daughter that brings me the most joy: Goodnight Moon, The Bear Snores On and Guess How Much I Love You are current favorites.
Most proud of:
My daughter’s quality of life. I know she is a happy little girl despite her many challenges.