Celebrity Parents Richard Engel Says They're in a 'Race Against the Clock' to Find a Cure for Son's Rett Syndrome Richard Engel tells PEOPLE that a recent effect of son Henry's condition has been the fact that he's "starting to have seizures now, which is unfortunate" By Charlotte Triggs Charlotte Triggs Managing Editor, PEOPLE Digital People Editorial Guidelines and Jen Juneau Jen Juneau Twitter Jen Juneau is a digital news writer for PEOPLE. A '90s teen and horror film connoisseur, she started at the brand in 2016, after a decade of working as a technical writer and then moonlighting as a journalist beginning in 2013. Originally from New Orleans, Jen grew up both in NOLA and Florida and eventually attended the University of Central Florida in Orlando (still her home base!), where she earned a bachelor's in English/technical communication, with a minor in magazine journalism. People Editorial Guidelines Published on September 23, 2019 11:55 AM Share Tweet Pin Email Richard Engel and his wife Mary are taking their son Henry Thomas‘ Rett syndrome diagnosis day by day — but it’s still “hard” to see him struggle. “There have been some setbacks,” the On Assignment with Richard Engel star tells PEOPLE in an exclusive chat about the couple’s older child, who turns 4 this month and was diagnosed in 2017 with the rare genetic neurological disorder that leads to severe physical and cognitive impairments and has no cure, as of yet. “He is starting to have seizures now, which is unfortunate,” Engel continues of Henry. “We put him on a seizure med. He has a compulsive repetitive motion that is becoming more pronounced … [putting] his hands in his mouth or [scratching] his eyes vigorously.” “That’s something where we have to watch him constantly to stop him from doing that because he could hurt himself,” he adds. “We started using these arm braces that have a splint in them to discourage him from doing that.” Engel also reveals that Henry “has hip problems,” explaining, “Because he’s not walking and running around and jumping like normal kids, his hips aren’t forming like they should be. There’s a possibility we’re going to have to do major surgery on his hips.” Courtesy Richard Engel Want all the latest pregnancy and birth announcements, plus celebrity mom blogs? Click here to get those and more in the PEOPLE Parents newsletter. Richard Engel on “Difficult” Realization That New Son Will Surpass Big Brother Due to Rett Syndrome 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.” Richard Engel and family. Courtesy Richard Engel RELATED VIDEO: Richard Engel: Fighting to Save My Son Engel praises his wife for “working hard” with “redoubling her efforts in physical therapy” for Henry, calling her a “tough woman” and sharing that she “puts him in a standing frame, in order to put weight on his hips. She holds him upright, an hour a day … exercising him, stretching him. More therapies than ever.” “The problem is, while we wait [for a treatment], things deteriorate,” he adds. “The body starts to go, the hips start to go … the spine hasn’t been an issue, but it could be. We’re in a race against the clock no matter how much physical therapy we do, and we do a ton.” But there is a “beautiful aspect” to the family’s experience, too, despite the challenges: “If we can do this, there’s a possibility of an enormous knock on effect. Because most of these genetic disorders behave in this same way.” For more information on Rett Syndrome or to support the research being done with Henry, visit NRI.TexasChildrens.org. On Assignment with Richard Engel airs Sunday at 9 p.m. ET on MSNBC.