A Connecticut couple is making it their mission to protect all parents from going through the same heartache after their baby died from a rare virus called human parechovirus. 

"This was not even on my radar. I mean I was worried about COVID. I was worried about every other virus that I've ever heard of and never heard of this," said Kat DeLancy. 

DeLancy says it started with baby Ronan being very irritable, with redness on his chest and no interest in eating. A few days later, doctors said his oxygen saturation levels were frightening. "And that's when she rushed him back and he was intubated in like a minute, and shortly afterwards they started realizing that he had some seizures," said  DeLancy. 

After Ronan was given sedatives, doctors did a lot of tests and determined it was parechovirus.

"They actually said at one time he will recover and he will leave the hospital." 

Sadly, Ronan didn't.  The couple says their final moment with Ronan was miraculous. "An hour before he passed away, he opened his eyes and we lost it," said DeLancy.

"He opened his eyes like right there. It was insane," said Mitch DeLancy.

That moment is more than enough motivation for the couple to make everyone aware of this rare virus and to fight for more testing.

In Ronan's case, he was at Yale where testing is being done. Most pediatricians aren't testing.

Dr. Andrew Wong with Hartford Healthcare in Westport says, "Even if it's diagnosed 100 times a year, the reality is that it's 100 times more prevalent." 

Wong says autopsies have shown the virus could be confused with sudden infant death syndrome, or SIDS.

"We need to consider it as a high likelihood illness for anybody especially children for under 5 years of age if they had a fever, rash, irritability, they should be checked for parechovirus or enterovirus. So, it's something that we're changing our protocols in," said Wong. 

Wong is encouraging parents to be careful around crowded public swimming pools and at day cares where there a lot of children in one spot. 

Kat and Mitch DeLancy are already getting responses from state legislators who want to help.  They also have a website called Research for Ronan. They're hoping it gets shared with all parents and pediatricians.