Conversations with Allie Benson

Today we’d like to introduce you to Allie Benson.

Hi Allie, can you start by introducing yourself? We’d love to learn more about how you got to where you are today?
Hi! Thank you so much for taking time to talk to me today. My name is Allie Benson and I am the founder of a local nonprofit called Charlie’s Champs. My husband and I started Charlie’s Champs in honor of our first daughter, Charlie, who was born still in December 2016. That year, on the 4th of July as America was celebrating the Declaration of Independence with beach days, barbeques, patriotic music, and fireworks, 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 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 have 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 was missing in St. Pete was community and family sporting events where kids with disabilities could comfortably participate. Charlie’s Champs is a non-profit organization that strives to provide equipment and events for those kids who cannot participate in little league and soccer and martial arts, etc. We specialize in adaptive bicycles and community bike events as biking is an activity that kids of all ages, developmental levels, and diagnoses can participate in together which each other. We also run a free, durable medical equipment closet through Facebook for people to pass on what they are no longer using or request something that they aren’t able to find. Charlie will always remain in our hearts and now her legacy provides 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.

Would you say it’s been a smooth road, and if not, what are some of the biggest challenges you’ve faced along the way?
As with any growing group, Charlie’s Champs community has had its share of ups and downs. My husband and I both work full time outside of Charlie’s Champs and our little family has been expanding quickly. While we would love to be able to focus all of our time and energy on our nonprofit, which is our true passion, life has a way of throwing challenges at everyone. 2020 has been particularly challenging for us and pretty much everyone else as the safe and comfortable world that we were used to no longer exists. The population of kids who we work with is fragile and often immune-compromised. It has been a struggle to keep the sense of community alive in a time where we can’t safely gather together. We have managed to continue some of our virtual fundraising events, so we have focused most of 2020 on getting as many adaptive bikes as possible for kids within our community. While they haven’t been able to come together nearly as often as we would like, we have given many kids opportunities to participate in safe, fun, recreational activities with their close friends and family by providing them with their own bikes for home. Recently we were finally able to cohost a safe, outdoor bike ride where kids and their families were able to come at an assigned time to bike, do art projects, play at the park, and be around other kids and families while maintaining an appropriate distance.

Alright, so let’s switch gears a bit and talk business. What should we know about your work?
Outside of running our nonprofit, I am a pediatric physical therapist at Johns Hopkins All Children’s Hospital. My career allows me the opportunity to stay connected with and continue to grow our Charlie’s Champs community day in and day out despite the challenges that this year has provided. I have a very strong and dedicated group of therapists around me who are dedicated to helping support our Charlie’s Champs community outside of the office. My husband is a licensed attorney, but he runs a commercial construction company for work. His creative brain and ability to build whatever he puts his mind to are setting us up for a future of making/adapting our own bikes for the children in the community. Between my knowledge of kids with special needs and their bodies and my husband’s ability to create, we hope to eventually expand into making our own bikes and bike adaptations.

We all have a different way of looking at and defining success. How do you define success?
Success is easy to define when we are able to provide kids with something so empowering! We define it simply by the smiles that we put on kids’ faces and the responses that we get from the kids and their families when we are able to provide them with something that they have never had access to, something that gives them independence. We are a relatively young nonprofit, but each year we have been able to provide more families with opportunities to make lasting memories with their children despite their special needs. We have given away over 25 bikes and countless pieces of adaptive equipment over the last few years. We have also hosted several events where kids and their families get to come together to do something fun that these kids normally wouldn’t participate. In December 2018, we introduced a free equipment closet and exchange group called Charlie’s Closet. Over the last two years, thousands of medical supplies and pieces of durable medical equipment have passed between families in the Tampa Bay Area, and it has now expanded throughout central and southern Florida. This year, we have also been able to deliver brand new bikes in both Ft. Lauderdale and Ft. Myers. Before that, we had not left the Tampa Bay Area.

Contact Info:

• Email: charlieschampsfl@gmail.com
• Website: charlieschampsfl.com
• Instagram: @charlieschampsfl
• Facebook: Charlie’s Champs FL