This NBC News Correspondent Seeks Cure For Son’s Debilitating Disease

The Today Show is a morning favorite among viewers, often being the early news show to beat among the networks. One of the reason’s for the show’s popularity is the panel’s openness about their personal lives. Hoda Kotb, Savannah Guthrie, Al Roker, Carson Daly and the rest of the news team often share stories on their families, as well as personal struggles.

One member of the NBC News team is dealing with a literal life-and-death situation for his 4-year-old son.

NBC News’ Richard and Mary Engel, with son Henry | Nathan Congleton/NBC/NBCU Photo Bank via Getty Images

A life-changing diagnosis

NBC News chief foreign correspondent Richard Engel is no stranger to danger. In 2012, Engel and five crew members were held captive by armed gunmen while covering the country’s civil war in late 2012, according to Variety. The news group was held hostage for five days.

As a journalist who covers war-torn areas all over the world, Engel has proven to be a seasoned reporter and all-around tenacious individual. Yet he is now dealing with a very personal crisis – his son Henry was diagnosed at the age of 2 with Rhett’s Syndrome, a rare genetic neurological disorder that leads to severe physical and cognitive impairments.

According to People, Engel and his wife Mary began identifying developmental delays in Henry, which led them to pursue genetic testing. Engel received the diagnosis while he was in South Korea covering the possible North Korean missile test. “My son is probably not going to walk, probably not going to speak, probably not going to have any mental capacity beyond the level of a 2-year-old,” the NBC News correspondent recalled when he spoke to People last year. “It was the middle of the night, and the public affairs officer was talking to keep us awake, telling us about her son joining the football team, and taking the SATs. I was thinking, ‘There’s going to be no football team. There’s going to be no SATs.’ I started to really mourn the future I thought we were going to have with Henry.”

Man on a mission

The condition comes with a host of physical issues, which Henry’s parents are spotting in him as he gets older. The reporter shared that his son has recently started experiencing seizures and hip issues. “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,” Engel explained to People.

Since being diagnosed with Rhett’s Syndrome, Engel and his wife have been working full speed ahead to find a cure for their son’s illness. The journalist shared 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,” Engel said. “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. If [they] can boost [the protein] to 60 percent, 90 percent, then it could really help… 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.”

The waiting

The journalist credits his wife for taking on so much of Henry’s care and physical therapy, calling her a “tough woman.” In addition to such focused attention on Henry, Mary delivered the couple’s second son, Theodore ‘Theo,’ earlier this month.

While they have hope for the research being done in Texas, they fear for Henry’s deteriorating condition while they wait for medical progress. “The problem is, while we wait, things deteriorate,” Engel said. “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.”

Engel continues to hold onto hope, for Henry as well as others afflicted with genetic disorders. “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.