Richard Engel Opens Up About His Son Henry's Rett Syndrome Diagnosis

It’s been a journey filled with unexpected twists and turns for Richard Engel and his wife, Mary Forrest. About a year after NBC News star Richard Engel and Mary welcomed their son, Henry Engel, into the world in September 2015, they began noticing signs that something wasn’t quite right. As Henry grew, the couple observed developmental delays, prompting them to seek genetic testing for their toddler. Last fall, the news they feared the most came true—Henry, now 2 years old, was diagnosed with Rett Syndrome, a rare genetic neurological disorder that often leads to severe physical and cognitive challenges.

Richard, 44, shared his raw emotions with People in a recent interview, revealing the heart-wrenching reality of his son’s diagnosis. “My son is probably not going to walk, probably not going to speak, and probably not going to have any mental capacity beyond the level of a two-year-old,” he said, his voice heavy with emotion. “I found myself thinking, ‘There’s going to be no football team. There’s going to be no SATs.’ I started to grieve for the future I thought we were going to have with Henry.” It’s a sentiment that many parents can relate to, but it’s one that Richard and Mary are facing with courage and determination.

Henry with his dad, Richard.

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A Journey of Discovery

Mary, 42, had what appeared to be a normal pregnancy before Henry’s birth. However, as their little boy grew, the couple began to notice signs that something might not be quite right. Henry struggled to gain weight as a newborn, raising concerns about his development. Richard recalled, “You hear these stories, that boys develop slower than girls. So we thought there was still a chance that he was just a late bloomer. That he was going to snap out of it.”

But as time went on, the reality became clearer. When they finally received the diagnosis of Rett Syndrome, Mary described the moment as feeling “like someone punched me in the stomach.” The couple was forced to confront some tough, practical questions. “We had to have really practical conversations,” Mary said. “If he needs a wheelchair, do we have to move? And what are we going to do for Henry when he is older, once we’re gone?”

Fighting Back with Therapy

Today, Henry is undergoing seven different forms of physical therapy each week, all aimed at helping him advance both physically and cognitively. Mary shared a recent milestone with pride—Henry sat up on his own for the first time. “I think we practiced that a thousand times,” she said of the moment. “We’re not looking for huge milestones. Anything is good as long as it’s progress.”

Henry with his mom, Mary.

Embracing Progress, No Matter How Small

For Richard and Mary, progress is measured in small, yet significant steps. “You hear parents say, ‘I woke up this morning and went down to the crib and the baby was standing,’” Richard said. “That didn’t happen in our case and it doesn’t seem to be in the cards. So we’re focused on the little things.” It’s a mindset that reflects their resilience and determination to make the most of every moment with Henry.