NBC’s Richard Engel Announces Death Of 6-Year-Old Son, Who Had Rett Syndrome

NBC’s Richard Engel Announces Death Of 6-Year-Old Son, Who Had Rett Syndrome.. Richard Engel, NBC News’ chief foreign correspondent, shared sad news Thursday that his 6-year-old son Henry has died. Engel and his wife had been open about the child’s battle with a rare genetic condition.

NBC Richard Engel Announces Death Of 6-Year-Old Son, Who Had Rett Syndrome

“Our beloved son Henry passed away,” Engel wrote on Twitter. “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.”

Henry, who was born in September 2015, was just an infant when his parents first realized he was not reaching developmental milestones, according to a tribute for Henry on the Texas Children’s Hospital website.

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Through a genetic test, doctors learned he had a mutation to his MECP2 gene. The mutation causes 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,” the hospital said.

Henry had been treated at Texas Children’s Hospital’s Duncan Neurological Research Institute since 2018.

The institute’s Dr. Huda Zoghbi, who studied Henry’s mutation, called him “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,” Zoghbi said in a statement. “His quiet fight against this terrible disease was incredible. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on our Rett research. We will continue to push as hard as possible to develop treatments. This is how we will honor his life.”

In another tweet on Thursday, Engel said: “Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease.”

 

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Engel has shared updates on Henry over the years, writing essays in 2018 and 2019 about both the joys and heartbreaks the family experienced.

In the later essay, Engel shared that he “finally got a ‘Dada'” from his son.

“It was a long time coming, which made it all the sweeter — an unexpected reward,” he wrote.

At the end of May, Engel had tweeted a video of Henry, writing that he had “taken a turn for the worse.”

“His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness,” he shared. “He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.”

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