VERO BEACH, Fla. — It's no easy task to keep track of 4-year-old Ali in Vero Beach.
Like a typical kid, he is always on the move with his endless energy. But Ali's mother, Janie Desir, does her best and keeps Ali safe every day, despite challenges with her eyesight.
WPTV asked Desir about her eyesight as we spoke with her on a park bench at a recent Let's Hear It meet-up in Vero Beach.
"Horrible. It's bad," Desir described and told us she is legally blind.
Desir said she's worried about her son developing the same eye condition later in life.
"How am I going to get him prepared for this, just in case it does happen?" Desir wondered.
That curiosity had Desir seeking out free resources, but she discovered a gap. She pointed out Ali is on the autism spectrum, but has perfect vision.
Since she is the one with the eye condition that only gets worse with time, she couldn't get the free early learning tools in braille she was seeking out.
That was Desir's cue to start advocating.
"I feel like a mother that is out on a mission to help everyone," Desir said.
Desir has created and authored four braille books focusing on early learning for letters, numbers, colors, and shapes. She is now working to drum-up funding to publish the books in English, Spanish, and Creole.
"I've actually been through the struggle, and now I'm here to actually talk about it, be about it, and I'm, like, OK. This is the change I have to make a difference," Desir said. "I'm the only one who's in control of my feelings. So every day is just putting my best foot forward."
Desir hosts meet-ups with other families facing similar challenges at parks and other community spots. You can follow Janie Desir and learn more about her community meet-ups by clicking here.
Janie is planning her first community event where she wants to connect families in similar situations and exchange knowledge on free resources.
It's on Saturday, July 27 from 11:30 a.m. to 2:30 p.m. at the Gifford Youth Achievement Center, located at 4875 43rd Ave. in Vero Beach.
