NBC News’ Richard Engel’ Children And Family Life Explored as His Son Henry Died From Rett Syndrome

Richard Engel, the chief foreign correspondent for NBC News, announced on Thursday that his six-year-old son Henry had passed away from a rare neurological disorder.


Richard Engel’ Son

Henry was born in September 2015. He was just an infant when Engel and his wife noticed that their son was struggling to hit typical developmental milestones. After a series of tests, they found that Henry had a mutation in his MECP2 gene, the mutation that is responsible for Rett syndrome.

Richard Engel
(Credit: Getty Images)

Since 2018, Henry’s mutation has been studied by Dr. Huda Zoghbi at the Texas Children’s Hospital’s Duncan Neurological Research Institute. In a tweet shared on Thursday, Richard Engel wrote that “researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease.”

About Rett Syndrome

Rett syndrome is an incurable genetic neurological disorder that typically affects girls, but can also, in rare cases, affect boys. Rett syndrome leads to many developmental delays, including “loss of speech and a variety of motor difficulties”.

The International Rett Syndrome Foundation reported that the genetic neurological disorder occurs in one of every 10,000 female births. It is recognized in children between six to 18 months old.

Most babies with Rett syndrome seem to develop as expected within the first six months of life.

Parents and doctors may not notice a slowing of development until their child is older. Children with Rett syndrome may experience increasing problems with motor skills, coordination, and communication.

The other symptoms of Rett syndrome include unusual hand movements, seizures, and breathing issues.
Rett syndrome is misdiagnosed as autism, cerebral palsy, or a non-specific developmental delay. Blood testing can confirm the presence of the MECP2 mutation which causes Rett syndrome. However, the MECP2 mutation is also seen in other disorders. Thus, a Rett syndrome diagnosis requires additional clinical testing based on observed signs and symptoms.

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Stages of the Syndrome

There are six stages of Rett syndrome, according to the International Rett Syndrome Foundation. The first is the early onset stage, which occurs at six months to 1.5 years when symptoms of the disorder are overlooked.

The rapid destructive stage happens when a child is one to four years old and begins to lose the ability to perform skills they previously had. The third st age, the plateau stage, ranges from preschool age to adulthood where problems with movement continue but behavior may slightly improve.

The final stage, the late motor deterioration stage, can last for years or decades. It is marked by reduced mobility, muscle weakness, joint contractures, and scoliosis. However, not all children with Rett syndrome move through the stages similarly.


Illness before death

Henry received a diagnosis of Rett syndrome in the year 2017. In the year 2020, the journalist detailed how his condition had deteriorated as a result of the coronavirus lockdown. It had prevented him from attending school and consequently rendered him unable to move or speak.

The father made the revelation earlier this summer that Henry’s condition had worsened after he developed dystonia. it is a movement disease. It is a condition in which your muscles contract involuntarily, creating repeated or twisting movements.


Henry has made an everlasting effect on the Duncan NRI team as well as their ongoing study about Rett syndrome.

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