TOWSON, Md. — For three years, Michael and Michelle Daichman have dealt with an unknown: what was making their son Dash have seizure like episodes every day, unable to walk or talk?
He has a rare neurodegenerative disorder that no doctors could pinpoint until a few weeks ago, when the National Insitutes of Health emailed the Daichmans with a diagnosis.
“He has what’s called a deletion in the Chaserr gene. It’s incredibly rare. It was only found two years ago," Michelle Daichman said.
According to the NIH, this means the CHD2 gene becomes overactive resulting in neurological problems. It's a diagnosis only 9 children have globally.
“Our mind was blown," Michael said. "It was almost a sigh of relief now that we have a name with a diagnosis."
He told WMAR-2 News that the director of the Pediatric Intensive Care Unit at the Univeristy of Maryland Medical Center already scheduled a call with researchers on this.
The Daichmans are already on to next steps, speaking with other affected families in the country.
“We’ve spoken with two families so far. A couple of us are going to be talking tomorrow just to really ask, what have you done, what has worked for you?”
There's no known cure yet.
It'll be a long road ahead for the family, but they're moving forward with cautious hope.
“Cause we still don’t know. There’s no treatment, there’s nothing like that. And we still don’t know from episode to episode how that will look. But that being said, we’re like okay, we don’t have an unknown.”
They hope this will not only help Dash, but also other children down the line who might have the same diagnosis.
In the meantime they're focusing on kickstarting a foundation in Dash's name to help support organizations helping kids like him.
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