Rett Syndrome

Richard Engel and his wife had been open about their 6-year-old's battle with a rare genetic condition.

"He was in the hospital for 6 weeks, but is now home and getting love from brother Theo." Through a genetic test, doctors learned he had a mutation to his MECP2 gene. "He had the softest blue eyes, an easy smile and a contagious giggle. "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. "His quiet fight against this terrible disease was incredible. We always surrounded him with love and he returned it, and so much more."

Richard Engel recalled his 6-year-old's blue eyes, easy smile and "a contagious giggle" when sharing Henry passed away on Aug. 9.

The NBC correspondent gave an update in May that Henry had "taken a turn for the worse." He was in the hospital for 6 weeks, but is now home and getting love from brother Theo," Engel wrote on Twitter. The couple took Henry to get tested when he couldn't perform motor functions like walking, sitting or standing and had a hindrance in language. "Our deepest condolences to you and Mary and the rest of your family." Please don't despair" "I am so very, very sorry. MECP2 mutations cause Rett syndrome, the memorial page read. [revealing in an emotional essay on the "Today" show](https://www.today.com/parents/rett-syndrome-richard-engel-son-henry-s-milestone-life-special-t150348) that his son had finally said "dada" shortly after the NBC News chief foreign correspondent had returned home from a Syria work trip. [Our beloved son Henry passed away.](https://twitter.com/RichardEngel/status/1560273295206821889) He had the softest blue eyes, an easy smile and a contagious giggle," Engel wrote on Twitter, accompanied by a picture of his son. Sending you love." 9](https://texaschildrens.site/duncan-nri/henry.html), according to a memorial page posted on the Texas Children's Hospital website. "

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.

Henry was diagnosed with Rett syndrome, a rare neurological disorder.

He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.” In May, Engel shared a sweet video of Henry and his 2-year-old brother, Theo. “Rett syndrome can also cause seizures and intellectual disabilities," the Mayo Clinic notes. Over time, children develop problems with controlled movement and their muscles, coordination and communication. “A genetic test ultimately provided the answer: Henry had a mutation in his MECP2 gene. Mary and Richard.”

Richard Engel's son Henry has died at age 6 after battling the neurological disorder Rett syndrome, which affects the way the brain develops.

“He didn’t always respond as they expected, but the excitement in his eyes told them he enjoyed and appreciated it. Special needs kids have the most expressive eyes.” Mary and Richard.” The journalist first shared in 2017 that Henry was diagnosed with Rett syndrome and in 2020 explained how the coronavirus lockdown had worsened his condition, which left him unable to “walk or talk” because he was not able to attend school. “He was in the hospital for 6 weeks, but is now home and getting love from brother Theo,” he shared. [“turn for the worse”](https://pagesix.com/2022/06/01/richard-engels-sons-health-takes-turn-for-the-worse/) after developing dystonia, “a movement disorder in which your muscles contract involuntarily, causing repetitive or twisting movements,” per the Mayo Clinic.

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.

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).

What is Rett syndrome? Experts explain the symptoms of this rare genetic disorder and what we know about life expectancy and treatments so far.

He added that the goal of the drug is to help make symptoms milder and it would not reverse the condition. In Henry’s case, his mutation was so unique that he was actually the first person to have it, Zoghbi said. Huda Zoghbi, director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, who worked with the Engel family and got to know Henry. Rett syndrome is a rare genetic neurological disorder that affects brain development and leads to the loss of motor skills and speech abilities, as well as cognitive deficits. and there's quite a high frequency of autistic features," Patterson said. It is a new change that happens in the baby's DNA right after conception. Patients may also experience dystonia, where muscles contract involuntarily and the limbs or trunk are held stiffly in an unusual position, he added. Sumit Parikh, a neurologist with the Center of Pediatric Neurosciences at the Cleveland Clinic, told TODAY. On Thursday, Engel shared that her team of researchers at Duncan NRI are using Henry's cells to help cure Rett Syndrome. “It was the worst day of my life." He had the softest blue eyes, an easy smile and a contagious giggle. “I called the doctor and he said, ‘We found something.