Life is often a series of "befores" and "afters." For NBC News Chief Foreign Correspondent Richard Engel, the "after" began with a diagnosis that no parent is ever prepared to hear. Most of us know Engel for his stoic reporting from the world’s most dangerous frontlines—Iraq, Syria, Afghanistan. But his toughest assignment was never in a war zone. It was at home, alongside his wife Mary Forrest, as they navigated the brief, beautiful, and world-shaking life of their son, Henry.
Henry Engel wasn't just a child with a rare disease. He was, quite literally, a medical unicorn.
The Reality of Richard Engel Son and the Rett Syndrome Myth
When news broke that Henry had passed away in August 2022 at just six years old, the internet did what it does: it mourned, it shared, and it moved on. But there’s a massive misconception that Henry was just "another" tragic case of a childhood illness. Honestly, that couldn't be further from the truth.
Henry was born in September 2015. He looked perfect. But as months ticked by, the milestones didn't come. No crawling. No sitting up. After a desperate global search for answers, the verdict came from a DNA test: a "typo" in the MECP2 gene.
Usually, this gene mutation causes Rett Syndrome, a devastating neurological disorder that almost exclusively affects girls. Why? Because the gene is on the X chromosome. Girls have two X chromosomes, so if one is broken, the other can act as a backup. Boys only have one. Usually, for a boy, this mutation is fatal before birth.
Henry was different. His mutation was a one-of-a-kind variant that allowed him to survive. He lived for nearly seven years, a feat that baffled and inspired the medical community.
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Why Henry's Cells Are Still "Working" Today
It’s kinda surreal to think about, but Henry is still working. Even now, years after his passing, his biological legacy is active in a lab in Houston. Dr. Hoda Zoghbi, the world-renowned director of the Duncan Neurological Research Institute at Texas Children's Hospital, has been very vocal about this.
She calls Henry’s cells the "secret" to unlocking a cure.
- The Rare Mutation: Because Henry’s version of Rett Syndrome was so specific, researchers can use his cells to study exactly how to "turn up" the volume of the MECP2 protein.
- A Roadmap for Autism: The research doesn't just stop at Rett Syndrome. Scientists believe that by figuring out Henry's genetic puzzle, they can apply those lessons to hundreds of forms of autism.
- The "Vendetta": Mary Forrest, Henry's mom, famously said they have a "vendetta" against the syndrome. They don't just want to manage it; they want it gone.
The hospital even dedicated a balcony to Henry. It’s a place for researchers to take a breath, look out, and remember why they are staring into microscopes for 14 hours a day.
The Day Everything Changed: Dystonia and the Final Battle
For years, the Engels lived in a state of high-alert hope. Henry used a walker. He communicated with cards. He said "Dada" and "I love you." If you’ve ever seen the videos Richard shared, Henry’s laugh was—basically—the best sound on earth.
But in mid-2022, things took a turn. Henry developed dystonia.
If you aren't familiar, dystonia is a movement disorder that causes uncontrollable muscle contractions. It’s exhausting. It’s painful. For a body already weakened by Rett Syndrome, it was too much. His health declined sharply.
When he died on August 5, 2022, the world saw a grieving journalist. But behind the scenes, Mary Forrest shared a gut-wrenching essay about spending one last week with him at the funeral home, singing his favorite songs and stroking his hair. It was a raw, human look at grief that stripped away the "celebrity correspondent" veneer.
What You Can Actually Do to Help
It’s easy to read a story like this and feel a sense of helpless sadness. Don't. That wasn't the point of Richard Engel sharing his son's journey. He did it so people would stop looking away from special-needs families.
If you want to honor Henry’s legacy, here are the real, actionable steps:
- Support the Duncan NRI: This is where the actual science is happening. They are using Henry's cells to develop gene therapies that could literally rewrite the future for children born with these mutations.
- Educate on Rett in Boys: Many doctors still believe boys can't have Rett Syndrome. Awareness saves lives by getting early intervention for those rare cases that do survive.
- Be the "Tummy Time" Parent: Engel often talks about the isolation of being a special-needs parent. If you see a parent struggling at a park with a child who "isn't hitting milestones," don't stare. Say hi. Treat the kid like a kid.
Henry Engel didn't get to grow up, but he might be the reason thousands of other children do. His life was short, but in the world of genetic research, he is a giant.
To stay truly informed, you can follow the progress at the Texas Children's Hospital memorial page for Henry. They provide regular updates on how his "work" in the lab is progressing toward clinical trials. Keeping the conversation alive ensures the funding for these "unprofitable" rare diseases doesn't dry up.