TOWSON, Md. — Michelle and Michael Daichman didn't think that their son Dash would live past one.
He just turned 3-years-old, now they're sharing his story - one of resilience and community support.
Dash has a rare neurodegenerative disorder that many doctors can't pinpoint, which means they also can't figure out a cure.
No diagnosis, no cure, all heart: 3 year old beating odds of rare neurodegenerative disorder
The disorder leaves the young boy unable to speak or walk and sit on his own.
His mom Michelle told WMAR-2 News that that's not the scary part.
“They look like classic seizures, he’s got the movements, the stiffening of his body, but during them he turns blue and stops breathing," she said, “Which is terrifying every single time, you never really get used to them.”
They have to perform mouth to mouth no matter where they are, whether that be at dinner or in a library.
Michael said that the episodes occur multiple times a day, and it happened twice as I sat down to speak with them on Wednesday.
“Our threshold for going to the hospital is usually CPR," he said.
Through it all, they make sure to treat him like a normal kid and celebrate every moment with him, like when he turned 3-years-old.
It was a milestone they didn't think they'd be able to see.
“It was really hard not to cry when all of his little friends are sitting around and singing happy birthday because you’re like, this is such a normal thing," Michelle said.
As the saying goes, it takes a village to raise a child and the Daichman's told WMAR-2 News that the village they have has been incredible.
Part of that support will be on display on Saturday at Charm City Run's Summer Block Party.
"Part of that is a 5k which Dash is the ambassador for."
It'll be called "Dash's INCREDIBLE 5k Dash."
Their many thanks also goes out to the many doctors that have helped them including ones at the University of Maryland Medical Center, Mount Washington Pediatrics, and organizations like Athletes Serving Athletes.
“He is the youngest athlete that runs with Athletes Serving Athletes, the youngest. And for him to be able to run is amazing. So being able to give back and that advocacy to all those organizations is really what we want."
Some people may look at their position and expect them to want to turn back the clock, but they couldn't be more wrong.
“I wouldn’t change a thing. But you just figure out a way, as we always say, to be incredible, figure out a way to do the positive.”
They're also looking to start a foundation in Dash's name to bring awareness to his disorder and raise money for institutions that have supported them and children like their son.
Dash's 5k starts at 7:30 a.m. in Timonium on Saturday.
Head here for more information.
