Bucks County families raising awareness for Acute Flaccid Myelitis
An illness that leads to sudden paralysis in kids continues to baffle doctors. While the professionals look for answers, some local families are banding together to raise awareness and push research.
We've been following news about this condition called Acute Flaccid Myelitis, or AFM, since 2014. That's when we first saw a spike in cases.
Many children were left with severe weakness to their limbs, and parents were left with questions.
Now, families in Bucks County are joining together with others also struggling with a rare illness, hoping to find answers.
Luke Deidloff, now 4 years old, is unstoppable.
Today, he walks with braces and a walker. Three years ago, he used a stander to get around.
But at 10 months old, he was a normal child learning to walk. Just a few months later, life changed forever.
"It started with a cold and a fever and it quickly progressed into him being paralyzed from the neck down," said Luke's mother, Dana Deidloff.
He regained upper body function, but like so many children diagnosed with AFM, his lower body was left partially paralyzed.
The CDC reports a spike in cases happening around this time every two years since 2014.
"You see all these kids who have this, you see them and it's like you don't feel bad for them because they are so strong and determined but inside you just want it to go away," said Luke's father, Gary Deidloff.
Research has been slow. The Deidloffs are hoping to change that, not just for Luke, but other families as well.
They've joined with the Siegal Rare Neuro-Immune Association for a Walk-Run-N-Roll fundraiser.
"It's not just Acute Flaccid Myelitis, its Transverse Myelitis, its MOG, its ADEM, it's Optic Neuritis," said Dana.
The idea is that there's strength in numbers. The goal is to raise money for research, but also lend support so families don't feel so alone.
"People deserve to live their best life, that's where we come in," said Dana.
Luke continues to make progress everyday. His parents hope to see more answers about AFM and prevent this from happening to other kids.
The Walk, Run 'n' Roll is this Sunday, October 6th at the Neshaminy High School track.
It starts at 1:30pm, but you can sign-up onsite at 1:00pm.
For more information about the Pennsylvania Walk-Run-N-Roll, CLICK HERE.
