The 4th of July is a day of celebration. We celebrate the Declaration of Independence with beach days and barbeques, we celebrate America with patriotic music and fireworks, and in 2016 my husband and I celebrated the news that we were pregnant with our first child. We went through the typical ups and downs of the first few weeks of pregnancy, but the first time we saw her tiny little heart beating like a flashing grain of rice on the ultrasound screen we fell in love. As the weeks passed, we tracked her growth from a sesame seed to an almond to a grape. We talked to her and played her music. We started to collect toys, clothes, and baby gear. Then, at a routine ultrasound in August, we were blindsided with terrible news: our so far perfect little girl had a severe birth defect called an omphalocele. Due to a complication early on in development, her abdominal wall didn’t close and all of her abdominal organs were growing in a round, beach ball like sac outside her body. To make matters worse, she also had a series of four heart defects called Tetralogy of Fallot. The doctors gave us the facts and then asked us something that no one should ever have to hear, “do you want to keep her?”.
I am a neurodevelopmental pediatric physical therapist. I work with kids who were born as early as 22 weeks and kids who were diagnosed with degenerative disorders in utero. I dedicate my life to kids who weren’t “supposed” to make it according to doctors and modern-day medicine. Each time I do a new evaluation I listen to the caregivers telling me about the moment when their doctors asked them the very question that I was faced with. Do we want to keep her? Yes.
Charlie was a fighter. She defied the odds for the next few months. Despite the endless bad news that the doctors continued to deliver, she did somersaults and played the drums on her built-in beach ball toy; however, on December 13th her little heart stopped beating. Charlie Sloan Benson was born silent two days later. Do we want to keep her? Forever.
Charlie’s Champs was founded in April 2018 in honor of Charlie. Although she isn’t here with us today, her legacy lives on to help the other kids out there who must fight to keep going. Do we get to keep her? Always.
We work and live in St. Petersburg FL, an incredible town filled with diversity, community, and people who love to play outdoors in the water and on land. What is missing in St. Pete are community and family sporting events where disabled kids can comfortably participate. Charlie’s Champs is a non-profit organization that strives to provide events for those kids who cannot participate in little league and soccer and martial arts, etc. Adaptive equipment will be provided specific for each disability so that kids can play and be apart of organized sporting events, allowing the children and their families to enjoy being on a team with others.
Charlie will always remain in our hearts and now her legacy will provide other children the joy of comfortably participating in team sports and camaraderie as their families can come together supporting each other as they raise children with disabilities.
- Allie & John Benson