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Richard Engel posts a heartfelt tribute to his late son Henry on his 7th birthday

The NBC News chief foreign correspondent’s son was diagnosed with the rare neurological disorder Rett syndrome as a toddler.
/ Source: TODAY

NBC News chief foreign correspondent Richard Engel shared a photo of his late son, Henry, on his 7th birthday.

"Henry would have turned 7 today," Engel tweeted on Sept. 29. "A big thank you to everyone who sent kind and thoughtful messages, and donated to support medical research to defeat Rett Syndrome. Happy Birthday Binks (our nickname)."

Engel tagged the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital, where doctors treated Henry before his Aug. 9 death.

Related: Richard Engel shares difficulty of watching baby son 'pass' by older brother with Rett syndrome

According to the Mayo Clinic, Rett syndrome is a rare neurological disorder that causes a loss of motor skills like walking or talking. The disorder is progressive, meaning it develops over time and can cause intellectual disabilities. There is no treatment or cure for Rett syndrome.

Henry was diagnosed around his second birthday on what Engel called "the worst day of my life" in a TODAY interview with his wife, Mary Forrest.

"I called the doctor and he said, 'We found something. It’s very, very severe. It’s lifelong, not treatable,'" Engel recalled. "I was in a state of shock."

Related: Richard Engel: Our son's special needs bring heartbreak, but we have hope


Today - Season 67
Richard and Mary Engel with their son, Henry, on Oct. 3, 2018.Nathan Congleton / NBC

The couple had ordered the genetic scan when Henry failed to meet developmental milestones such as walking or talking; they figured he was simply a "late bloomer."

Doctors, however, said Henry's mental and physical capacity would be severely limited.

When their son Theo was born in August 2019, Engel foreshadowed the difficulty of watching him surpass Henry developmentally.

"We know why there is this differential. And it’s going to be hard to watch Theo pass his older brother in terms of capabilities," Engel told People. "That’s going to be very difficult for us to see. To see a 1-month-old very soon overcoming his almost-4-year-old brother … that’s going to be tough.”

He added of their two sons, "It’s clear they’re different. So we are bracing ourselves for the day when this 1-month-old baby is going to do more than our 4-year-old."

Still, the family always hoped that Henry would beat the odds.

"None of this means we don’t enjoy our time with Henry," Engel wrote in a 2018 essay published by TODAY Parents. "I can’t imagine a child who is showered with more love. We gather on our bed several times a day for what we call 'cuddle parties,' where we kiss him, rub him, praise him (he loves to hear his name and be praised) and curl his thick, gorgeous hair in our fingers."

In March 2019, Engel revealed that Henry had uttered the word "Dada" — a triumph for the boy who, for the first time, verbalized it with unmistakable intention.

"He didn’t just say it once, but two or three times. There was an urgency and excitement to it," Engel wrote in a TODAY Parents essay.

Related: Savannah, Hoda and more send condolences to Richard Engel after son’s death

He added, "Having a special needs child makes you savor the patches of sunshine you cross on the hard, and often lonely, road toward a cure: the doctor’s visits that don’t go as badly as expected, a solid night’s sleep, or a Dada three and a half years in the making."

In August, Engel tweeted that Henry died.

"Our beloved son Henry passed away," he wrote. "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."

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