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NBC’s Richard Engel makes tragic announcement that son Henry, 6, has died from Rett Syndrome

NBC News' Richard Engel announced the death of his 6-year-old son Henry after his years-long battle with Rett Syndrome on Thursday, August 18

HOUSTON, TEXAS: The 48-year-old top foreign correspondent for NBC News Richard Engel announced the death of his 6-year-old son Henry after his years-long battle with Rett Syndrome on Thursday, August 18. Engel wrote alongside a sweet photo of his son, "Our beloved son Henry passed away. He had the softest blue eyes, an easy smile, and a contagious giggle. We always surrounded him with love and he returned it, and so much more.” According to the Mayo Clinic, Rett syndrome is a rare neurological disorder that affects the way the brain develops. This disorder, which has no cure, causes a progressive loss of motor skills and language.

Engel also provided a link to a memorial page on the Texas Children's Hospital website, which offered more details about Henry’s life and his diagnosis of Rett syndrome, a genetic brain disorder without treatment or a cure. The Texas Children’s Hospital page says, “MECP2 mutations cause Rett syndrome, a disorder that typically affects girls after their first birthday, robbing them of learned skills and leaving them with cognitive deficits, loss of speech, and a variety of motor difficulties.”

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The Engel family took Henry to the hospital’s Duncan Neurological Research Institute, or Duncan NRI, in 2018, and Duncan NRI’s founding director, Dr Huda Zoghbi, studied Henry’s mutation closely. On the tragic death of Henry, Zoghbi wrote, “Henry was special in so many ways. His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him. His quiet fight against this terrible disease was incredible.” Henry, according to Zoghbi, had a profound impact on the entire Duncan NRI team and its Rett research. “We will continue to push as hard as possible to develop treatments. This is how we will honor his life,” Zoghbi added. 

Engel was open about the challenges and rewards of raising a child with special needs over the years, and he provided regular updates on his son's status. In May, Engel provided an update on Henry's health, stating that he had taken a turn for the worse and that his illness had progressed. Henry received a tender forehead kiss from Engel's son Theo, 2, in a video that Engel posted on Twitter while Henry was in bed. The journalist captioned the touching clip, "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 said that after spending six weeks in the hospital, Henry was finally home and getting affection from brother Theo. In 2020, Engel spoke candidly about the COVID-19 lockdown's effects on Henry and his family. Henry was "not doing very well," he said in an open post for Today. Engel wrote, "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 colorful adjectives, but you get the point. He doesn't walk or talk. He can't feed himself efficiently. He doesn't sit up straight. Now that he's getting bigger, he can barely move independently." The father of two acknowledged that he and his wife "were doing better before COVID," and that school was the only place where [Henry] could engage with other children, which was a tremendous benefit for him.