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Richard Engel Opens Up About Son's Battle With Rare Form of Rett Syndrome

Brian Skellenger
Jan. 31, 2018
Twitter: @RichardEngel

NBC News chief foreign correspondent Richard Engel has seen some pretty harrowing things in his storied career. But learning that his son, Henry, was battling a rare form of Rett Syndrome was "the worst day of my life."

Engel was in South Korea when he got the news that the genetic scan had come back with the life-altering result. "I called the doctor and he said, 'We found something. It's very, very severe. It's life long, not treatable,'" Engel told NBC's Today. "I was in a state of shock. I got back into this convoy, shaking."

When Henry wasn't reaching developmental milestones, at first Engel and his wife, Mary Forrest, just attributed it to Henry being a "late bloomer." But when Henry was almost two and still wasn't talking or clapping his hands, they decided to have a genetic test done just to make sure.

Rett Syndrome (or RTT) is a rare genetic condition that almost exclusively affects girls. For most affected by the disorder, they will likely never learn to walk, talk, or be able to care for themselves. Since the genetic mutation involves a gene on the x chromosome, boys are usually affected more severely, since girls have a second x chromosome that remains unmutated.

Since the diagnosis in September, Engel and his wife have struggled with how to approach the devastating news.

But now, they're sharing their story in the hopes of bringing awareness to the disorder, and to sow some seeds of hope.

Early Tuesday morning, Engel shared a thread of very personal tweets revealing Henry's condition to his followers:







Engel also broke the news that Henry's rare form of Rett Syndrome may actually help lead to a viable treatment for Henry and others affected by the disorder:




As Engel mentioned in his tweets, he also sat down with Today's Savannah Guthrie and Hoda Kotb to discuss his family's journey. And it certainly wasn't easy for them to do:


But they're remaining as optimistic as possible:



Many on Twitter, including several of Engel's colleagues, commended Engel and Forrest for sharing their story:








And some shared their own inspiring stories as well:




And Engel responded to the outpouring of love with the level of class and compassion that he's known for:



As one Twitter user so eloquently stated, "we're pulling for you":



You can watch the entire Today segment below:



H/T: Twitter, Today