US journalist Richard Engel provides tragic update on son's rare condition
By April Glover|
American journalist Richard Engel has shared a heartbreaking update on his son Henry's debilitating genetic condition.
The NBC anchor took to Twitter to reveal his six-year-old son, who has Rett Syndrome, had "taken a turn for the worse" and spent the last six weeks in hospital.
"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," Engel wrote.
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"He was in the hospital for 6 weeks, but is now home and getting love from brother Theo."
Alongside the message, Engel also shared a touching video of his two-year-old son Theo kissing his brother Henry on the forehead.
In a second update for his followers, the journalist thanked everyone for their messages of support and posted a video of Henry sitting up.
"Thank you for the messages of support!? Today Henry was able to briefly support himself in a seated position during physio for the first time in a long time. Go Henry!" Engel said.
"Thank you everyone for all the kind messages, from Henry, our Mr. Handsome," he added, alongside a photo of Henry grinning.
Henry was diagnosed with Rett Syndrome, a neurological disorder which can cause severe physical and cognitive impairments, in 2017.
While it can result in a progressive loss of motor and language skills, most individuals with the condition survive into their 40s or 50s, according to ChildrensHospital.org.
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In 2018, Engel opened up about his son's rare and incurable condition on NBC's Today.
"I called the doctor and he said, 'We found something. It's very, very severe. It's lifelong, not treatable'," he explained.
"I was in a state of shock. I got back into this convoy, shaking. It was the worst day of my life."
Engel and his wife Mary Forrest were aware something was wrong with Henry as a toddler, because he had difficulty sitting up straight, talking and clapping.
The NBC foreign correspondent told People in 2019 that his son was "lacking a conductor gene" and that a medical team at Texas Children's Hospital were "trying to build a treatment that could help immensely".
In an essay for Today, Engel opened up about how his family was coping during the COVID-19 lockdown.
He said Henry, who was aged four at the time, was "not doing very well".
"Henry has severe special needs, and COVID has been an absolute nightmare for him and millions of other children like him. I'd add more colourful adjectives, but you get the point," wrote Engel.
"He can't feed himself efficiently. He doesn't sit up straight. Now that he's getting bigger, he can barely move independently."
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