Rett syndrome

NBC News correspondent Richard Engel announced his son Henry passed away from Rett syndrome, an incurable genetic neurological disorder.

On average, most individuals with the condition [survive into their 40s or 50s](https://www.childrenshospital.org/conditions/rett-syndrome#:~:text=While%20it%20is%20known%20that,into%20their%2040s%20or%2050s.). Since 2018, Henry’s mutation has been studied by Dr Huda Zoghbi at the Texas Children’s Hospital’s Duncan Neurological Research Institute. [Terms of use,](https://www.independent.co.uk/service/user-policies-a6184151.html) [Cookie policy](https://www.independent.co.uk/service/cookie-policy-a6184186.html) and [Privacy notice.](https://www.independent.co.uk/service/privacy-policy-a6184181.html) 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 easily overlooked. [Privacy policy](https://policies.google.com/privacy?hl=en) and [Terms of service](https://policies.google.com/terms?hl=en) apply. Blood testing can confirm the presence of the MECP2 mutation which causes Rett syndrome. The Mayo Clinic also states that other symptoms of Rett syndrome include unusual hand movements, seizures and breathing issues. Henry – who was born September 2015 – was just an infant when Engel and his wife noticed that their son was struggling to hit typical developmental milestones, according to the tribute page. However, not all children with Rett syndrome move through the stages similarly. “Our beloved son Henry passed away,” Engel wrote in a tweet signed both by himself and his wife, Mary Forrest. The third stage, the plateau stage, ranges from preschool age to adulthood where problems with movement continue but behaviour may slightly improve.

NBC anchor Richard Engel announced the death of his 6-year-old son, Henry, after a long battle with Rett syndrome.

He did, however, experience a moment of sheer happiness in March 2019 when his little one said, “Dada,” for the first time. “To parents with typically developing children, a little Dada may not seem like a big deal,” the television personality said. He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.” The news correspondent previously provided an update on his eldest son’s health aid the COVID-19 pandemic in an August 2020 essay for [Today](https://www.today.com/parents/richard-engel-kids-special-needs-are-not-ok-right-now-t188987). [ Richard Engel](https://www.closerweekly.com/tags/richard-engel/) is mourning the loss of his 6-year-old [son, Henry](https://www.closerweekly.com/posts/richard-engel-talks-son-henry-3-saying-dada-for-the-first-time/), after a long battle with Rett syndrome, a rare genetic neurological disorder. “Our beloved son Henry passed away,” the statement read.

The NBC News chief foreign correspondent announced on Twitter Thursday that his 6-year-old son Henry had died after his years-long battle with Rett Syndrome.

He also explained that Henry was "lacking a conductor gene" and that a medical team at "His condition progressed and he's developed dystonia: uncontrolled shaking/ stiffness." "Mary sings to him, sometimes a song she made up about Coco, and works with flash cards to teach him letters, numbers and colors all day long." Handsome." They think — and I'm still blown away by this — that he could hold the secret to finding a cure not only for himself, but for many other children with special needs." I do spa baths, combing his wet hair and giving him a head massage with conditioner," he said of their activities at home amid the pandemic. "That's going to be very difficult for us to see. "There is even a chance Henry's story could have a fairy-tale, after-school-special ending. I don't have a quick answer, but there is hope in this story," Engel continued. "We're not giving up by a long shot," he wrote. He had the softest blue eyes, an easy smile and a contagious giggle. "We're determined he will walk one day.

Henry Engel was one of the rare male cases of Rett syndrome, which causes cognitive and speech deficits and motor control issues.

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On Thursday, August 18, NBC News' chief foreign correspondent Richard Engel announced the passing away of his six-year-old son, Henry, due to Rett Syndrome.

It is possible that in the next few years, some sort of cure to mitigate the mutation or to ensure its prevention will be available. As per Rett Syndrome News, some of the affected individuals have even reached their 40s and 50s. As improved nutrition and overall care are provided, these probabilities are expected to improve.” According to Boston Children's Hospital, the disease can occur in any child at random. The disorder manifests itself in babies at a very early age, usually by the first six months. Zoghbi, Henry’s treatment and diagnosis further advanced the

NBC News correspondent Richard Engel announced his son Henry passed away from Rett syndrome, an incurable genetic neurological disorder.

On average, most individuals with the condition [survive into their 40s or 50s](https://www.childrenshospital.org/conditions/rett-syndrome#:~:text=While%20it%20is%20known%20that,into%20their%2040s%20or%2050s.). Since 2018, Henry’s mutation has been studied by Dr Huda Zoghbi at the Texas Children’s Hospital’s Duncan Neurological Research Institute. [Terms of use,](https://www.independent.co.uk/service/user-policies-a6184151.html) [Cookie policy](https://www.independent.co.uk/service/cookie-policy-a6184186.html) and [Privacy notice.](https://www.independent.co.uk/service/privacy-policy-a6184181.html) 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 easily overlooked. [Privacy policy](https://policies.google.com/privacy?hl=en) and [Terms of service](https://policies.google.com/terms?hl=en) apply. Blood testing can confirm the presence of the MECP2 mutation which causes Rett syndrome. The Mayo Clinic also states that other symptoms of Rett syndrome include unusual hand movements, seizures and breathing issues. Henry – who was born September 2015 – was just an infant when Engel and his wife noticed that their son was struggling to hit typical developmental milestones, according to the tribute page. However, not all children with Rett syndrome move through the stages similarly. “Our beloved son Henry passed away,” Engel wrote in a tweet signed both by himself and his wife, Mary Forrest. The third stage, the plateau stage, ranges from preschool age to adulthood where problems with movement continue but behaviour may slightly improve.

Dr. Huda Zoghbi is a prominent Rett syndrome researcher. She worked with NBC News correspondent Richard Engel and his son Henry who died.

But research takes time, and Zoghbi said she's "heartbroken" that she and her team weren't able to bring to the table something that could help Henry directly. "I love all of them," she said. "This kind of relationship is very important because it reminds everybody in the lab that there are human beings at the end of the road who are waiting and may one day benefit from this work." "I got some books, and the smiles I got from him — he was happy," she said. "That inspired us to start thinking of different ways where we can increase the protein that's made by this gene," Zoghbi explained. [his condition started to worsen a few months](https://www.today.com/health/nbcs-richard-engel-shares-update-son-special-needs-rcna31195) ago "in spite of the heroic effort his parents were doing with him," she said. By studying Henry's cells several years ago, she learned that Henry's mutation affected the function of the MECP2 gene in such a way that it caused an important protein for brain development to be produced at lower levels. "He has this smile that he looks at you — you'll see it in the pictures posted on the web — and naturally, you fall in love with him," she told TODAY. Zoghbi attributes the fact that Henry lived longer than most boys with the disease to his parents, in part. After sequencing was performed on Henry, it was discovered that he had a mutation to the gene involved in Rett syndrome. She recalled that she met Henry within his first year of life after Richard Engel and his wife, Mary, noticed their son wasn't reaching usual motor milestones — the first sign of Rett syndrome for many children, according to the foundation. [according to the National Institutes of Health](https://www.ninds.nih.gov/rett-syndrome-fact-sheet).