Richard Engel and his wife Mary are coping with their 2-year-old son Henry’s devastating diagnosis with Rett Syndrome —and hoping that medical research may lead to a breakthrough before their son experiences the onset of more serious symptoms.
Rett Syndrome is a rare genetic neurological disorder that leads to severe physical and cognitive impairments. “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,” says Engel, 44, NBC News’ Chief Foreign Correspondent, in the new issue of PEOPLE, on stands Friday.
But as Dr. Huda Zoghbi, the preeminent Rett Syndrome researcher, at Texas Children’s Hospital and Baylor College of Medicine, continues to study an anomaly in Henry’s case (unlike in most Rett cases, he appears to have only a partial mutation of the MECP2 gene on his x-chromosome), and his parents hope that she will be able to unlock a cure before he experiences the many severe secondary symptoms of the disorder.
“Unfortunately, if it doesn’t happen, the prospects are bad, because part of the condition is that Henry’s health can change over time. Right now, he’s happy. He plays. He moves. But doctors have told us there is about a 70 percent plus chance that he’ll develop epilepsy, that he could go rigid, where his joints and neck lock up,” Engel says.
“[That] would be devastating, because he couldn’t play. He couldn’t really function the way he does now, and I think his demeanor and his mood would honestly suffer. It would be a lot harder for us to make him happy if he can’t look at what he wants to look at.”
Engel’s wife Mary, 42, says the couple are vigilantly watching for signs of any change in Henry’s health.
“We have to obviously to watch for all of these things very closely and have him checked out,” says Mary, a stay-at-home mom who currently engages her son in up to seven forms of physical therapy a week, in order to help him advance physically and cognitively.
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(The couple say they feel blessed to be able to afford his many expensive therapies without having to choose based on price.)
“If there’s no transformative therapy in the next few years and he does start having epilepsy or his joints lock up, that’s a stage I’m very afraid of,” says Engel. “But this research has enormous potential.”
Engel says his wife’s resolve has kept him strong.
“In a certain sense I’m the luckier one, because I get to step away on reporting trips. And because sometimes they’re dangerous, I really have to focus,” says Engel, who frequently travels to war zones to report and survived a violent kidnapping in Syria in 2012 while covering the civil war there. “It forces my mind on something else. For Mary this is a 24/7 commitment.”
For her part, Mary says she hasn’t had time to feel sorry for herself. “You cannot lie in bed all day. Henry is awake. He is in the bed giggling. He needs me. You just have to get on with it every day,” she says. “There are days when I feel depressed, but this is my life. This is my child. I have to take care of him.”
Now, the couple is considering having another baby.
- For more on Richard Engel’s son’s heartbreaking battle, pick up this week’s issue of PEOPLE, on stands Friday
“You want to make sure you have the energy to dedicate to a new child,” says Mary, “but it would be a really wonderful thing for Henry.” Adds Engel: “I’d like to do it. We’ll see if it’s in the cards for us.”
(While Rett is rarely inherited, for those who conceive via fertility procedures, there is a test to detect the disease that can be done before embryo implantation. The couple declined to comment on their plans.)
And for now, the Engels are just focused on keeping their little boy smiling.
“There are happy times,” says Mary. “When he’s at peace, he smiles, he giggles. We play with him. We cuddle him. We never miss an opportunity to show him we love him.”
Adds Engel: “What we put in, he gives back in terms of the love and the joy. That helps a lot.”
For more information on Rett Syndrome and to donate to Dr. Zoghbi’s research, go to www.duncannri.org.