NBC's Richard Engel shares heartbreaking news with sweet video of son Henry, 6, who has debilitating genetic disorder

NBC's Richard Engel shares heartbreaking news with sweet video of son Henry, 6, who has debilitating genetic disorder

June 1, 2022

NBC's Richard Engel shared heartbreaking news this week with a sweet video of his six-year-old son Henry who has a debilitating genetic disorder.

Engel, the Chief Foreign Correspondent for NBC News, took to social media on Tuesday to announce his son has "taken a turn for the worse."

The American journalist wrote on Twitter: "For everyone following Henry’s story, unfortunately he’s taken a turn for the worse.

"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."

Included in Engel's tweet is a 13-second video clip of his son Henry getting a kiss on the cheek from his brother.

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According to the National Institute of Neurological Disorders and Stroke (NINDS), dystonia is a "disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures."

The movements caused by the disorder may be painful, and some people with dystonia may have a tremor or other neurological symptoms, NINDS explains.

Back in 2018, Engel opened up to NBC's Today about a type of genetic disorder Henry was diagnosed with.

Recounting when he received the results of his son's genetic scan a year prior, Engel said: "I called the doctor and he said, 'We found something. It’s very, very severe. It’s lifelong, not treatable.'"

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Engel explained: "I was in a state of shock. I got back into this convoy, shaking. It was the worst day of my life."

Both he and his wife, Mary Forrest, were aware something was wrong with Henry when he was a toddler as he had difficulty talking, clapping, and sitting up straight.

When they received Henry's completed genetic tests they learned their two-year-old had a variation of Rett syndrome, a genetic brain disorder.

Rett syndrome is described by NINDS as a neurodevelopmental disorder "characterized by normal early growth and development followed by a slowing of development, loss of purposeful use of the hands, distinctive hand movements, slowed brain and head growth, problems with walking, seizures, and intellectual disability."

There is no cure for Rett syndrome or dystonia.

Following Engel's news of his son having dystonia, the 48-year-old dad shared a photo of Henry appearing to smile in a follow-up tweet.

He wrote: "Thank you everyone for all the kind messages, from Henry, our Mr. Handsome."

On Wednesday, Engel continued thanking everyone for their support

"Today Henry was able to briefly support himself in a seated position during physio for the first time in a long time," he tweeted, alongside a video of his son sitting upright.

"Go Henry! For more info about supporting research into neurological disorders and RETT Syndrome: http://duncannri.org."

Engel's update comes about three years after the proud dad wrote an essay about his son.

He wrote: "I finally got a 'Dada.' It was a long time coming, which made it all the sweeter — an unexpected reward.

"Our son Henry is 3 and a half years old and has special needs."

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"His physical and mental development aren’t on pace with other children," said Engel. "So when I got the Dada from him, I went a little wild."

Engel said the heartwarming moment was "a validation, an acknowledgment 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."

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