Richard Engel shared that his 6-year-old son’s health is declining after developing a neurological disorder that causes involuntary muscle contractions and pain.
“For everyone following Henry’s story, unfortunately he’s taken a turn for the worse,” the NBC News chief foreign correspondent, 48, tweeted Tuesday. “His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness.”
Engel shared a video of his younger son, 2-year-old Theo, cuddling and kissing Henry as the latter rests in bed looking shaky and weak. Henry also has a tube in his nose as he wraps up in his comforter.
“He was in the hospital for 6 weeks, but is now home and getting love from brother Theo,” the journalist added.
Engel also posted a photo of Henry smiling while wearing a special strap to help with the condition and thanked his followers for their support.
“Thank you everyone for all the kind messages, from Henry, our Mr. Handsome,” he tweeted.
Dystonia is “a movement disorder in which your muscles contract involuntarily, causing repetitive or twisting movements,” according to the Mayo Clinic. The spasms can range from “mild to severe” and can be “painful” and interfere with the performance of day-to-day tasks. There is no cure, but medication or surgery can help ease symptoms.
Engel first shared in 2017 that Henry was diagnosed with Rett syndrome, an incurable condition that leads to severe physical and cognitive impairments.
In 2020, Engel opened up about how the coronavirus lockdown made things more difficult for Henry’s development.
“Henry has severe special needs, and COVID has been an absolute nightmare for him and millions of other children like him,” he wrote in a “Today” essay. “I’d add more colorful adjectives, but you get the point.”
He explained that Henry, who was 4 at the time, “doesn’t walk or talk,” adding, “He can’t feed himself efficiently. He doesn’t sit up straight. Now that he’s getting bigger, he can barely move independently.”
Engel and his wife, Mary Forrest, said that life was much better for Henry when he was able to attend school.
“The kids would come up and kiss him, tussle his hair and bring him toys,” Engel shared. “He didn’t always respond as they expected, but the excitement in his eyes told them he enjoyed and appreciated it. Special needs kids have the most expressive eyes.”
Engel and Forrest welcomed Theo in August 2019 and Henry in September 2015. They tied the knot in May 2015.
