Richard Engel, an NBC News journalist | NEWSBCS

Youssef Shnino
18 Aug, 2022

 Richard Engel, an NBC News journalist, has announced the loss of his 6-year-old son, who had Rett syndrome.

Richard Engel, NBC News' senior foreign reporter, announced the death of his 6-year-old son Henry on Thursday. Engel and his wife had been forthcoming about their child's struggle with a rare genetic disease.

"Our precious son Henry died," Engel said on Twitter. "He had the most beautiful blue eyes, an easy grin, and a charming laugh. We always surrounded him with affection, which he responded in spades."

According to a dedication to Henry on the Texas Children's Hospital website, Henry was barely a newborn when his parents first noticed he wasn't meeting developmental milestones. 

Doctors discovered he had a mutation in his MECP2 gene through a genetic test. According to the hospital, the mutation causes Rett syndrome, which is "a condition that primarily affects girls after their first birthday, robbing them of learned abilities and leaving them with cognitive deficiencies, loss of speech, and a range of movement issues."

Since 2018, Henry has been receiving care at Texas Children's Hospital's Duncan Neurological Research Institute.


Dr. Huda Zoghbi of the institution, who researched Henry's mutation, described him as "unique in so many ways."

"From the moment I saw him, his warm and appealing grin, and the way he linked with his eyes, stole my heart," Zoghbi said in a statement. "His peaceful battle against this dreadful sickness was extraordinary. What is most remarkable is Henry's influence on so many of us at the Duncan NRI and on our Rett research. We shall continue to make every effort to create remedies. This is how we shall remember him."

"Researchers are making fantastic progress utilizing Henry's cells to help treat RETT Syndrome so others don't have to endure this dreadful condition," Engel wrote in another tweet on Thursday.

Engel has provided updates on Henry over the years, writing articles in 2018 and 2019 on the family's pleasures and heartbreaks.

Later in the article, Engel mentioned that he "finally got a 'Dada'" from his kid.

"It was a long time coming," he wrote, "which made it all the sweeter — an unexpected prize."

Engel posted a video of Henry at the end of May, stating that he had "taken a turn for the worse."

"His condition worsened, and he acquired dystonia, which is uncontrollable shaking/ rigidity," he explained. "He was in the hospital for six weeks, but he's home now and enjoying affection from brother Theo." 

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