BOSTON - Maureen Shea's son Tommy was found dead in a group home for the disabled in Norwell two years ago.
"There was yellow tape around, the Norwell detectives were there. It was like an out-of-body experience," she said. "I didn't think it was real."
It was real and it was unthinkable.
"The detective came out and I said, 'what position did you find my son in?' And he said, 'face down.' I said, 'he must have had a seizure,'" Maureen explained.
Tommy Shea began having nocturnal seizures after a near-fatal bout of viral encephalitis in childhood.
To protect Tommy from injury when seizing, his mother purchased a seizure monitor, which tracks breathing and bodily movements. It sends out a loud alarm when a seizure is happening. It was sitting on his nightstand when he was found dead.
"I wanted to make sure that they knew how to maintain the seizure monitor, and I was told that I only had to tell the house manager," Maureen said.
The monitor ran on batteries and emitted a distinctive sound when power was low.
Two weeks before his death, Tommy was hospitalized for what turned out to be migraine headaches.
"When Tommy was in the hospital, I think the batteries went [dead]," she said.
No one knows if Tommy had a seizure before he died, but when his family finally retrieved the monitor the batteries were, indeed, dead.
"This should not have happened," Maureen said. "People weren't trained enough. People weren't looking where they should have been looking."
Maureen is still grieving the loss of her son, but she's also taking action.
She's pushing for passage of Tommy's Bill, which would, among other things, require staff in group homes be trained on lifesaving devices such as seizure monitors.
State Senator Patrick O'Connor (R-Weymouth) is a sponsor.
"How to maintain, how to operate, how to fix lifesaving equipment -- that's literally a matter of life and death for some of our most vulnerable residents," Sen. O'Connor said.
Maureen Shea knows what the bill won't do.
"It's not going to bring my son Tommy back. It's not. And we will miss him forever," She said. "But this bill has hope for all of us that we can protect other persons with disability."
Tommy's Bill got off to a fast start on Beacon Hill but it's now in a committee looking at how much it would cost to implement. Supporters say very little.
In any case, they have less than a year to get the bill passed and signed.
© 2019 Cox Media Group.