Who was Richard Engel's son, Henry? | The Sun
NBC News chief foreign correspondent Richard Engel's son, Henry, passed away on August 8, 2022.
Engel has spoken out about his son's health since he was first diagnosed with Rett Syndrome in 2017.
What happened to Richard Engel's son?
Richard Engel and his wife, Mary Forrest, noticed their son was having trouble with his cognitive and motor skills.
Their son, Henry, was diagnosed with Rett Syndrome in 2017 when he was only two years old.
The syndrome is a rare genetic disorder with no known cure that prevented Henry from developing in the long term.
Engel wrote a personal essay in 2019 that shared the emotional triumph when his son finally said "dada" at the age of three years old.
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"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 in the essay published on Today.
"He didn’t just say it once, but two or three times. There was an urgency and excitement to it," he said, adding: "Angels sang from on high.
"A crowd offstage erupted in thunderous applause. And somewhere, an actor humbly folded at the waist."
Engel and Forrest first realized something wasn't quite right with their son when, at the age of two, he couldn't talk or clap his hands.
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“It was a mystery and we thought, ‘Okay, well, there are late bloomers,’” Engel told Today in 2018.
Shortly after, they brought Henry to a physician who came back with the horrific news.
"We found something. It’s very, very severe. It’s life long, not treatable,’” Engel recalled the doctor telling him.
“I was in a state of shock. I got back into this convoy, shaking. It was the worst day of my life.”
The diagnosis was Rett Syndrome, meaning Henry's development may never advance beyond that of a toddler.
“It’s not just delay. It means lifelong, permanent, untreatable physical and intellectual impairment,” Engel said.
“Unfortunately, the more we learned about it the worse the news got.”
When did Henry pass away?
Henry succumbed to Rett Syndrome on August 9, and his family is asking anyone to donate to research for a cure for Rett Syndrome.
Engel wrote a heartfelt post on Twitter about his son's passing, writing: 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."
Engel announced his son's failing health in an emotional video on May 31, 2022.
He posted a video on social media of his youngest son, Theo, leaning toward his brother to give him a kiss.
"One more," the two-year-old says in the video before leaning in to give Henry, now six years old, another kiss.
In his caption alongside the video, Engel wrote: "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 was in the hospital for 6 weeks, but is now home and getting love from brother Theo.”
Advanced symptoms of Rett Syndrome include stiffness and seizures, and doctors have told Engel and Forrest that Henry will most likely never walk, talk, or be able to dress himself.
The syndrome is typically found in girls, and cases in boys are rare, often resulting in death in utero or shortly after the boy is born.
According to one of Henry's doctors, Huda Zoghbi, director of the Duncan Neurological Research Institute at Texas Children’s Hospital, he has a mutation of the gene which has allowed him to live longer.
“In Henry’s case, it doesn’t totally inactivate the protein, but it’s not functioning fully and not at 100 percent at normal level,” Zoghbi told NBC News.
Henry's family is asking anyone to donate to research and studies that go toward researching a cure for Rett Syndrome.
In a tribute to Engel's son, the Jan and Duncan Neurological Research Institue at Texas Children's Hospital announced they are continuing to conduct research using Henry's cells.
The tribute says: "Henry made the best of every single day and worked tirelessly in his many physical and developmental therapies.
"He continues to be an inspiration for Dr. Zoghbi and her team as they work to find effective treatments for Rett syndrome, and they already are making significant progress with Henry’s own cells."
It continued: "Henry’s family has requested that those who wish to honor his memory kindly direct contributions to support our continued research efforts.
Can Rett Syndrome be cured?
Henry's mutation of Rett Syndrome provides doctors with the unique opportunity to search for a cure to the rare genetic disorder.
Zoghbi is in charge of conducting the research after being the one to diagnose Henry in 2017.
“Henry's mutation is unique in the world. But because it's unique is what makes it so valuable. Sometimes from the rarest thing, you can learn the most," Zoghbi, told Today.
She has said her lab is working to replicate Henry's cells to try to boost the protein, MECP2, which would boost brain function in those affected.
"We know today there are hundreds of genes that can cause autism or can cause intellectual disability or complex psychiatric disorders,” Zoghbi told the outlet.
She added: “Using Henry's cells to study Rett syndrome, when successful, can be applied to any of those diseases."
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