NBC News chief foreign correspondent Richard Engel has shared some sad news about the health of his 6-year-old son, Henry.
“For everyone following Henry’s story, unfortunately he’s taken a turn for the worse,” Engel wrote on Twitter. “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.”
In the touching video Engel shared, his son Theo, who will turn 3 in August, gives Henry kisses as he lies in bed.
Henry was born with a variation of Rett syndrome, a rare genetic disorder that starts with normal early development, which then starts to slow usually around 6 to 18 months of age, causing loss of use of the hands, problems with walking and intellectual disability, according to the National Institute of Neurological Disorders and Stroke. There is no cure for the condition, and people with Rett syndrome need care to treat their symptoms.
Soon after sharing the first video, Engel tweeted another sweet photo of Henry sitting up and looking at the camera.
“Thank you everyone for all the kind messages, from Henry, our Mr. Handsome,” he wrote in the caption.
Engel and his wife, Mary Forrest, have been candid about their son’s diagnosis. In 2018, Engel recalled the shock of learning that his son will likely never be able to perform tasks such as walking or dressing himself.
“It’s not just delay. It means life long, permanent, untreatable physical and intellectual impairment,” Engel said on TODAY in 2018. “Unfortunately, the more we learned about it, the worse the news got.”
Engel also opened up about the feeling of watching his younger son surpass Henry in developmental milestones.
“You hold a baby like Theo and he’s wriggling,’’ he told People in 2019. “His muscles are moving. When he is upset, he screams with his whole body and kicks his legs with power. It’s something we never saw with Henry. … We were hoping (Henry) would grow out of it. … Then we realized it was a genetic condition, and he’s not going to get over it.”
But even with all the difficult moments, there have been joyful milestones, too — such as when Henry said “Dada” for the first time at 3 and a half years old.
“It was a long time coming, which made it all the sweeter — an unexpected reward,” Engel wrote in a 2019 essay for TODAY.
“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.”