Richard Engel's son was diagnosed with Rett Syndrome, a neurological disorder that leads to severe physical and cognitive impairments

By Helen Murphy
March 15, 2019 12:25 PM

Richard Engel‘s son called him “Dada” for the first time — and Engel can’t stop lovingly sharing his excitement.

Engel, 45, opened up on the Today show Friday morning and penned an emotional essay about how hearing the word “Dada” was extra-special to him, after his son Henry, 3, was diagnosed with Rett Syndrome, a rare genetic neurological disorder that leads to severe physical and cognitive impairments.

“Our son Henry is 3 and a half years old and has special needs,” Engel began his essay. “His physical and mental development aren’t on pace with other children. So when I got the Dada from him, I went a little wild.”

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Engel then told the story of how the “Dada” happened.

“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.’ “

“He didn’t just say it once,” Engel added, “but two or three times. There was an urgency and excitement to it.”

“Henry had made the sound before. ‘Da-Da,’ or ‘Ga-Da,’ and even vaguely made it about me, when I was in the room with him or holding him close to my face,” he continued. “But this time it was stronger and more decisive. Dada was a single word and he was clearly looking at me, talking to me, addressing me.”

“To parents with typically developing children, a little Dada may not seem like a big deal,” the proud dad said. “But 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.”

“It was something I’d been waiting for for years,” the NBC correspondent added on the Today show Friday morning. “A lot of parents, it happens naturally, it happens early on. Henry’s situation is different.”

“My world lit up,” he said.

Richard Engel with his wife, Mary, and son Henry

In January 2018, Engel opened up to PEOPLE about he and his wife Mary’s fears about Henry’s future.

“My son is probably not going to walk, probably not going to speak, probably not going to have any mental capacity beyond the level of a 2-year-old,” he said.

Engel is also working with Dr. Huda Zoghbi, who is continuing to study an anomaly in Henry’s case (unlike in most Rett cases, he appears to have only a partial mutation of the MECP2 gene on his x-chromosome). Henry’s parents hope that she will be able to unlock a cure before he experiences the many severe secondary symptoms of the disorder.

“If Henry can cure himself or lead to a cure, it would give his life meaning,” Engel said. “It would give his life a significance beyond the significance of most lives.”

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