Eight-year-old Alyssa Hagstrom was born with a rare disorder that left her unable to use her arms and legs. Confined to a wheelchair most of the day, she can’t eat without assistance. But that doesn’t stop her from trying.
“She is very self-motivated and wants to be as independent as possible,” says photographer Jennifer Kaczmarek. “Though the reality is that she cannot do most things on her own.”
Kaczmarek met Alyssa just after her fifth birthday. She started photographing her as part of a freelance assignment for a nonprofit group in Daytona Beach, Florida.
Moved by the young girl’s determination and “amazing spirit,” Kaczmarek says she felt compelled to do more.
“When we were done, I wasn’t ready to let go,” she says. “What little I had begun to learn about her was enough for me to know she deserved to have someone in her corner fighting for her.”
Alyssa was diagnosed with arthrogryposis multiplex congenita, which is marked by stiff joints and abnormal muscle development. The condition affects approximately one in 3,000 people.
Kaczmarek founded Love for Alyssa last year to help offset the family’s medical costs. Since then, the nonprofit has raised nearly $5,000 with an exhibition and a fundraising walk.
The organization recently expanded to include like-minded photographers working to raise awareness and support for other people battling health problems.
“Even though this has been three years in the making, I feel like this is now the beginning,” Kaczmarek says. “Alyssa has made me realize that I should be using my vision and talent to give back in some way.”
As a mother of three running a nonprofit for the first time, Kaczmarek has also learned the importance of perseverance, she says.
While awaiting approval to turn her company into a tax-exempt charitable organization, Kaczmarek continues to document Alyssa’s daily struggles. She has been moved by the response in her community.
“I believe photography allows people to connect in a way they otherwise could not,” she says. “A single image can speak magnitudes about what life is like for others.”
- Brett Roegiers, CNN