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, tweetedTuesday, May 31, 2007. “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.”
Henry and his wife were welcomed into the home of the journalist by Henry in 2015. Mary ForrestFour years later, Theo was born to the couple. 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.
Engel, who was 2 years old when Henry was diagnosed with a disability, shared his shock at learning that Henry may not be capable of performing daily tasks such as dressing or walking. “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. Rett syndrome can cause speech delays and hand coordination problems. There is no cure for the condition, but some symptoms can be stabilized over time.
When speaking with Today, Engel described the moment he found out about Henry’s condition as being “the worst day” of his life. Forrest and Engel have leaned on each other 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.”