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Engel — who welcomed his second child with Mary, son Theodore “Theo,” four weeks ago — tells PEOPLE that Henry is “lacking a conductor gene” and that a medical team at Texas Children’s Hospital is “trying to build a treatment that could help immensely.”
“It’s not that [Henry] has brain damage — although the seizures aren’t helping — but he’s lacking the protein so the brain isn’t functioning,” he says. “In Texas, they’re trying to fool the body chemically into producing more of the protein [safely]. If they can, then the other problems become less.”
Engel explains that Henry “has half the protein he needs,” and would “be dead” if that number was zero. But the team at Texas Children’s is “encouraged that they’re going to find” an effective treatment for the little boy.
“If [they] can boost [the protein] to 60 percent, 90 percent, then it could really help,” says Engel. “There’s no reason to believe he can’t wake up — that he can’t learn how to control his brain and his body. It would almost be like he was born from the moment the treatment began. We’re hoping, in a few years, we can start a treatment that is still being invented.”