Alexa Jennings was diagnosed with opsoclonus myoclonus syndrome, or OMS, when she was just 18 months old. She spent most of her young life secluded, because any contact with germs proved to be life threatening.
“Oh my goodness, so when she was sick.. we taught her how to walk four times, we taught her how to talk four times, we pretty much had a mind set of home schooling. Just the germ factor and that kind of thing,” said Brooks Jennings, Alexa’s dad.
But when Alexa turned five, she received the present of a lifetime.
Her family announced she was in remission and the Make-A-Wish Foundation was sending her to Disney World. Now three years later, Alexa hasn’t slowed down.
Alexa said, “Well I’ve been exercising and I’ve been to school and I’ve done a whole lot of stuff. With OMS I couldn’t do any of that. I couldn’t exercise, I couldn’t go outside, I couldn’t even go to school.”
Alexa’s now thriving as she just finished a triathlon.
“This is the triathlon medal, I got it for being a finisher. It has what I did, like swimming biking and running,” said Alexa.
Her dad watched on the sidelines with pride, knowing just how far his little girl has come.
“The triathlon is probably the proudest daddy moment I’ve had up to this point. A kid we’ve taught how to walk four times, is running, biking, and swimming and she wanted to do it. It was ‘hey I want to do this triathlon’ and she did it and she finished it,” said Brooks.
Part of the Make-A-Wish Foundation’s core, is letting families experience the power of a wish. Something that can change lives.
“Just for me, as dad, it was just finally a break. A break from the everyday bad stuff. Thing after thing until finally she was able to just go and have some fun,” said Brooks. “I can tell you it changed our lives at that point. Like I said for years, it had been constant hospital after hospital, it’s huge for us.”
So, what was her favorite part about the trip?
“Being like dancing and I won a trophy like every single kid who did it won a trophy. It has brought me joy and it made me have a lot of fun,” said Alexa.
Alexa has some advice for kids who are about to head to Disney on their wish trips.
“Anyone that goes to Disney World, don’t look for a trash can to play with that looks like an elephant.”
If you’d like to get involved in the Make-A-Wish Foundation and help kids just like Alexa, their number is (806)785-9474.
Alexa’s family started the OMS Life Foundation to help others who are living with the illness. It’s so rare, there are only 780 known patients in the world.
The OMS Life Foundation helps with research grants and working to find a cure. If you would like to help out or learn more CLICK HERE.