NBC News correspondent Richard Engel shared a heartbreaking update on his son Henry’s health amid the 6-year-old’s battle with Rett syndrome.
“For everyone following Henry’s story, unfortunately he’s taken a turn for the worse,” Engel, 48, tweeted on Tuesday, May 31. “His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness. He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.”
The journalist welcomed Henry in 2015 with wife Mary Forrest and son Theo arrived four years later. The couple have been candid about their eldest child’s struggles with his rare medical condition and the research being done to find a cure.
When Henry was 2 years old, Engel opened up about learning that the little one may not be able to perform daily tasks, such as walking or dressing himself, due to his disability. “It’s not just delay. It means life long, permanent, untreatable physical and intellectual impairment,” the reporter said on Today in 2018. “Unfortunately, the more we learned about it, the worse the news got.”
Symptoms of Rett syndrome usually aren’t immediately noticeable when a child is born, emerging around 6 to 18 months. The genetic disorder causes developmental delays in speech and can lead to the loss of coordination or use of the hands. While there is no long-term cure, some symptoms may stabilize over time.
While speaking with Today, Engel described the moment he found out about Henry’s condition as being “the worst day” of his life. However, he and Forrest have leaned on one another throughout their journey. “It’s made our relationship stronger actually. We’re all we’ve got,” Engel said in 2018. “We’re all he’s got right now, so we need to be a team.”
The following year, the Peabody Award winner shared one of Henry’s biggest milestones in a heartwarming first-person essay, reflecting on the “unexpected reward” of the toddler saying “Dada” for the first time.
“As I was singing good morning to Henry and reconnecting after a long trip away, he looked at me, locked eye-contact and said, clear as any word, ‘Dada,’” Engel wrote in 2019. “He didn’t just say it once, but two or three times. There was an urgency and excitement to it.”
Engel continued, “To parents with typically developing children, a little Dada may not seem like a big deal. But for me it was a validation, an acknowledgement that he’s in there, knows me, knows that his mother and I are forces for good in his life, and above all, that he loves us. … Having a special needs child makes you savor the patches of sunshine you cross on the hard, and often lonely, road toward a cure: the doctor’s visits that don’t go as badly as expected, a solid night’s sleep, or a Dada three and a half years in the making.”
