What is Rett Syndrome, the disease Richard Engel’s son died of?

• NBC News correspondent Richard Enge’s son has died of Rett Syndrome.
• It is a rare genetic disease.
• Engel shocked his followers with a sad Twitter message.

Popular NBC News correspondent Richard Engel is going through a very difficult time as he recently announced the death of his six-year-old son, Henry, from a disease known as Rett Syndrome, according to CBS News.

Henry was six years old and both the journalist and his wife spoke openly about the rare genetic condition that their child suffered from and that ultimately took his life. This rare disease has left this family’s home filled with sadness and so it will be difficult for them to overcome.

THE MESSAGE RICHARD ENGEL POSTED

The message that Richard Engel posted on Twitter broke the hearts of internet users. There is not much worse for a father than announcing the death of his youngest son.

He wrote the following: “Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle. We always surrounded him with love and he returned it, and so much more.” With these words, he broke the hearts of his relatives, friends, acquaintances, co-workers and followers.

WHAT IS RETT SYNDROME?

After he was born, Henry’s parents realized something wasn’t right with his development. Doctors did some genetic testing and discovered that he had a mutation in his MECP2 gene, so they immediately began treating the child.

But what is the mutation that causes Rett syndrome? It is basically «a disorder that typically affects girls after their first birthday, depriving them of learned skills and leaving them with cognitive deficits, loss of speech and a variety of motor difficulties,» according to Texas Children’s hosptal. Filed Under: Rett Syndrome

WHAT DOES THE FAMILY SAY?

In a Thursday tweet, Engel wrote: «Researchers are making incredible progress using Henry’s cells to help cure RETT syndrome so others don’t have to endure this terrible disease,» and posted several updates about his child’s condition over the years.

«It was a long time coming, which made it all the sweeter — an unexpected reward,» he said of the first time his son said ‘dada’. And toward the end of May, Engel tweeted a video of Henry and wrote that he had «gotten worse.» “His condition progressed and he developed dystonia – uncontrollable tremors/stiffness.” «He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.» Filed Under: Rett Syndrome

WHAT DO THE DOCTORS SAY?

Henry was treated at the Duncan Neurological Research Institute of Texas Children’s Hospital since 2018. For this reason, the institute’s Dr. Huda Zoghbi called him «special in many ways.» «His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him,» Zoghbi said in a statement, according to CBS News.

“His silent fight against this terrible disease was incredible. What is more amazing, however, is the impact Henry had on so many of us at the Duncan NRI and in our Rett investigation. We will continue to do our best to develop treatments so we will honor his life,” he said. Filed Under: Rett Syndrome