NBC's Richard Engel announces death of 'beloved son' Henry, who had Rett syndrome

NBC News correspondent Richard Engel shared Thursday that his 6-year-old son, Henry, has died following a Rett syndrome diagnosis.

"Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle," Engel wrote on Twitter, accompanied by a picture of his son. "We always surrounded him with love and he returned it, and so much more."

Henry died Aug. 9, according to a memorial page posted on the Texas Children's Hospital website. He was diagnosed as an infant with Rett syndrome, a rare genetic neurological disorder that leads to severe physical and cognitive impairments.

"His parents noticed that he was not reaching his developmental milestones, and he underwent numerous medical exams to discover the cause," the memorial page reads.

Engel celebrated Henry's milestone third birthday in 2019, revealing in an emotional essay on the "Today" show that his son had finally said "dada" shortly after the NBC News chief foreign correspondent had returned home from a Syria work trip.

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"My wife Mary had been telling Henry I was coming home, but because of his condition it’s hard to know what’s sinking in," Engel wrote in the essay, "He still struggles with basic things like picking up a ball with both hands."

Engel continued, recounting the sweet story of the moment his son said "dada."

"As I was singing good morning to Henry and reconnecting after a long trip away, he looked at me, locked eye-contact and said, clear as any word, 'dada,'" Engel wrote.

Though some parents with "typically developing children" might underestimate the weight of the greeting, Engel wrote that it had an important significance for him.

"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," Engel wrote.

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NBC News colleagues and other notable names sent condolences to Engels on Twitter.

Songstress Nancy Sinatra called the news a "tragedy."

"To say I'm so sorry isn't enough. I'm heartbroken for you, and I have no words that make any sense," Sinatra wrote. "He will always be with you, even in the emptiest times though you can't hold him in your arms. Please don't despair"

MSNBC's "The Katie Phang Show" host Katie Phang said she was lifting Engel and his family "in love and support."

"Such devastating news. The loss of a child is a pain that no parent should ever endure," Phang wrote. "Our deepest condolences to you and Mary and the rest of your family."

NBC and MSNBC correspondent Jacob Soboroff hopes "sweet Henry's memory" will be a "blessing."

"We are all so lucky to have gotten to know him through the stories you and Mary so bravely shared," Soboroff wrote. "I am so very, very sorry. Sending you love."

What is Rett Syndrome?

A genetic test revealed Henry had a mutation in his MECP2 gene, a protein that helps neuron function. MECP2 mutations cause Rett syndrome, the memorial page read.

Rett syndrome is an incurable rare developmental disorder that causes a loss of motor skills and language, according to the Mayo Clinic. It typically affects females.

"(Rett syndrome) 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," the memorial page read.

Newborns with Rett syndrome develop in an expected manner for the first six months, though afterward they begin to lose skills such as crawling, walking, communicating or using their hands, the clinic says.

These complications will then progress to possibly include muscle coordination and communication issues, seizures and cognitive impairments.

Engel and his wife first noticed changes in Henry after six months when the child failed to sit up without help or couldn't hold objects, according to People. The couple took Henry to get tested when he couldn't perform motor functions like walking, sitting or standing and had a hindrance in language.

Engel told People on Sept. 23, 2019, that Henry began to have seizures. The NBC correspondent gave an update in May that Henry had "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," Engel wrote on Twitter.

Contributing: Anika Reed

This article originally appeared on USA TODAY: Richard Engel's son Henry has died, NBC correspondent announces