What Happened to Richard Engel’s Son? The Young Boy’s Medical Condition Has ‘Taken a Turn for the Worst’

NBC News journalist Richard Engel and his wife, Mary Forrest, have experienced joy and pain after the birth of their second son in 2015. Engel recently shared awful news about his son's health.

Richard Engel married Mary Forrest in 2015, and they welcomed their eldest son, Henry, that September. Unfortunately, the NBC News journalist shared that his son's medical condition had worsened.

Henry developed dystonia, which means he has uncontrolled shaking and stiffness. The boy spent six weeks in the hospital before going home with his parents and younger brother, Theo.

WHAT CONDITION DOES RICHARD ENGEL'S SON HAVE?

Engel and Forrest noticed that Henry was not an entirely healthy boy before he turned two. He could not talk, walk, clap his hands, or sit straight.

They took him to several doctors, but nobody identified the problem. The couple even believed Henry was a late bloomer, but he was not.

Engel and Forrest ordered a set of genetic tests and got the results in September 2017, when Engel was in South Korea with US troops. The doctor told him they discovered Henry had a "very, very severe" condition: a variation of Rett syndrome.

When the journalist heard the doctor saying Henry's condition was lifelong and untreatable, he was shocked. Engel pointed out that it was the "worst day" of his life.

WHAT IS RETT SYNDROME?

Rett syndrome is a neurodevelopmental disorder that almost exclusively affects girls. Australian physician Dr. Andreas Rett discovered, named, and described the condition in a 1966 journal article.

Patients with Rett syndrome have average growth and development. After a certain point (which varies from child to child), they can no longer use their hands properly. They also show problems with crawling, walking, and making eye contact.

Their brain and head grow at a slowed pace, and they can present seizures and physical and intellectual disabilities. Unfortunately, doctors have found no cure for the syndrome, and its treatment focuses on managing the symptoms.

[Theo] is not shy when it comes to showing love to his big brother.

It is essential to remark that Rett syndrome is one of the few genetic disorders in which less than one percent of the recorded cases are inherited. Henry's case is unique, and doctors are studying it with hopes of finding treatment for others.

WHAT HAPPENED WHEN RICHARD ENGEL'S SECOND SON WAS BORN?

Engel and Forrest always knew that Henry was different, but the birth of their second son, Theo, in August 2019, gave the couple much more perspective.

They confessed that having a second child came with bittersweet moments as it was challenging to see Theo passing Henry with some developmental milestones. Engel said:

"I would think there are certain things he is already doing that Henry doesn't do — the amount of power in his limbs and the control he has with his muscles, even at this tiny age."

Even Theo's cry was different. He did it with so much energy and strength, something Henry sadly never showed. Theo is two years old, and he is not shy about showing love to his big brother.