NBC News' Chief Foreign Correspondent Richard Engel's 6-year-old son, Henry, has died following a battle with Rett syndrome. For an optimal experience visit our site on another browser. The NBC News chief foreign correspondent, 48, shared the heartbreaking news on Twitter Thursday. Alex Murdaugh sentenced to life in prison for murders of wife and son, Biden had cancerous skin lesion removed last month, doctor says, White supremacist and Holocaust denier Nick Fuentes kicked out of CPAC, Tom Sizemore, actor known for "Saving Private Ryan" and "Heat," dies at 61, Biden team readies new advisory panel ahead of expected reelection bid, At least 10 dead after winter storm slams South, Midwest, House Democrats unhappy with White House handling of D.C.'s new criminal code. "All of us are sending our love to Richard, to Mary and to Theo," said co-host Hoda Kotb. 49,041, This story has been shared 17,637 times. But because it's unique is what makes it so valuable. Even as the boy approached the second year of his life, he couldnt talk or clap his hands. Do Not Sell My Personal Information, Click to share on Facebook (Opens in new window), Click to share on Twitter (Opens in new window), Click to email a link to a friend (Opens in new window). The final stage can last for decades. The father of two admits he and his wife Mary "were coping better before COVID," revealing that "school was the only place where [Henry] could interact with other children," which was a huge asset for him. ", "Having a special-needs child was difficult before COVID. Children with Rett syndrome can lose motor skills, including purposeful movement of the hands, and may develop scoliosis or difficulties with their gait, which make them very unsteady, Patterson said. There is no cure for the condition, and people with Rett syndrome need care to treat their symptoms. He had the softest blue. According to the National Institute of Neurological Disorders and Stroke, Rett syndrome can cause loss of use of the hands, problems with walking, seizures, slowed brain and head growth and intellectual disability. Fox News Flash top headlines are here. Their son, Henry, was diagnosed with Rett Syndrome in 2017 when he was only two years old. Henry was diagnosed with Rett syndrome, a genetic brain disorder that does not have a treatment or cure, as a toddler. "Our beloved son Henry. The mutation causes Rett syndrome, "a disorder that typically affects girls after their first birthday, robbing them of learned skills and leaving them with cognitive deficits, loss of speech, and a variety of motor difficulties," the hospital said. When policymakers and public officials prioritize what to open, where and when, I hope they keep special-needs children in mind.". "We know today there are hundreds of genes that can cause autism or can cause intellectual disability or complex psychiatric disorders, Zoghbi told the outlet. Other families can't afford to turn their homes into therapy gyms, and not all community support is strong,' he said. Aslak's son consents, and invites the king into the forest to witness his dexterity. You hold a baby like Theo and hes wriggling, he told People in 2019. Henry has Rett syndrome, which is extremely rare in boys. So if a way can be found to boost levels of the protein or correct the actual gene, people with the disease would be able to start learning everything they couldnt before treatment. To support the research: https://t.co/M8LV8SHv6r pic.twitter.com/UNnDONMtR1. Boys, who have an X and a Y, only have the mutated gene, which generally results in their death either in utero or shortly after they are born. He can't feed himself efficiently. ", Researchers are making amazing progress using Henrys cells to help cure RETT Syndrome so others dont have to endure this terrible disease. A diagnosis is confirmed through genetic testing, but doctors may make also clinical diagnosis based on symptoms, the experts said. In the touching video Engel shared, his son Theo, who will turn 3 in August, gives Henry kisses as he lies in bed. NBC News' Richard Engel reveals his son's heartbreaking medical journey. Its hard to say were close. Our beloved son Henry passed away. So far, the treatments for the incurable conditionare mostly limited to various forms of therapy, like physical therapy, speech therapy, and behavioral therapy. He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.. To parents with typically developing children, a little Dada may not seem like a big deal. "The kids would come up and kiss him, tussle his hair and bring him toys," Engel explains. In life, there are choices. Sitemap, Your California Privacy Rights The mission of NINDS is "to reduce the burden of neurological diseasea burden borne by every age group, every segment of society, and people all over . We will continue to push as hard as possible to develop treatments. Cookies collect information about your preferences and your device and are used to make the site work as you expect it to, to understand how you interact with the site, and to show advertisements that are targeted to your interests. NBC News chief foreign correspondent Richard Engel's son, Henry, passed away on August 8, 2022. NBC News Chief Foreign Correspondent Richard Engel announced Thursday that his son Henry, 6, has died. "Additionally, a number of children will get an unusual pattern of breathing and other problems, including heart rhythm problems.". "He was in the hospital for 6 weeks, but is now home and getting love from brother Theo. "Our beloved son Henry passed away. "My dear Henry," she added, "you will be missed.". "He had the softest blue eyes, an easy smile and a contagious giggle. The second stage, known as 'rapid destruction,' begins between the ages of one and four. There is nothing more frustrating than hearing him upset and not being able to figure out what's wrong and how to soothe him. MEGHAN MCCAIN: Ohio in a poisonous soup. There was an urgency and excitement to it," he said, adding: "Angels sang from on high. I'd add more colorful adjectives, but you get the point," wrote Engel, adding that Henry, who was 4 at the time, "doesn't walk or talk. Tributes and condolences poured in for Engel on Twitter after he shared the heartbreaking news. "He didn't always respond as they expected, but the excitement in his eyes told them he enjoyed and appreciated it. Henry was special in so many ways. Henry was born with a variation of Rett syndrome, a rare genetic disorder that starts with normal early development, which then starts to slow usually around 6 to 18 months of age, causing loss of use of the hands, problems with walking and intellectual disability, according to the National Institute of Neurological Disorders and Stroke. Its controlling what other genes and proteins are made within the cell in response to stimuli.. The internet is left in uproar after shopper reveals she spent a whopping $50 on a GROCERY BAG from pricey celebrity-loved food store Erewhon, Sun goes down on the Murdaugh dynasty: As Alex is jailed, surviving son Buster is left with modest apartment, $530k inheritance, a law career in tatters after plagiarism incident - and could now face probe over gay teen's death. "We found something. You can find out more and change our default settings with Cookies Settings. We've received your submission. 'You hold a baby like Theo and hes wriggling. "For everyone following Henry's story, unfortunately, he's taken a turn for the worse," the journalist captioned the touching clip. At the time, he added that Henry was "now home and getting love from brother Theo" after being hospitalized for six weeks. The chief foreign correspondent of NBC News, Richard Engel, shared the news that his young son Henry died this week. This is how we will honor his life. Born in 2015, Henry began to miss important developmental milestones and their doctor later informed them after a genetic scan that he had the disorder due to a mutation in his MECEP2 gene. He did hydrotherapy in a warm pool with hoists attached to the deck. pic.twitter.com/FAGo1CrrVP. She participated in. The progression of the disease can be roughly divided into four stages. Mary and Richard. Richard Engel announced the heartbreaking news that his son Henry has died after a battle with Rett syndrome. She has said her lab is working to replicate Henry's cells to try to boost the protein, MECP2, which would boost brain function in those affected. In June, Engel said Henry had taken a turn for the worse, developing dystonia, characterized by shaking and stiffness. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Richard Engel is trying to find the good on a very sad day. Girls have two copies of the X, which means they have a functional copy of the gene to somewhat mitigate the effects of the mutated one. Popular American journalist and author Richard was born on 16 September 1973. Henry has offered researchers a window on the disease and made it easier to study because every single cell in his body has the mutated gene, said Zoghbi, an investigator at the Howard Hughes Medical Institute and a professor and director of the Texas Childrens Duncan Neurological Research Institute at Baylor College of Medicine. Richard Engel's son Henry was born with Rett's disease, a rare genetic mutation making it so that his "physical and mental development aren't on pace with other children." Engel and his wife were utterly shocked upon first hearing the doctor's diagnosis of their infant son in 2017. "No matter what's coming, we want Henry to know he's loved," Richard Engel said in the segment. 'He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.'. WASHINGTON -. Engel shared the heartbreaking news in a joint statement with his wife, Mary Forrest, on Twitter Thursday. "We always surrounded him with love and he returned it, and so much more.". Richard and Mary Engel, with son Henry on Wednesday, October 3, 2018. So we roll the dice, hoping not to hit seven and COVID out," Engel says, acknowledging that they are "lucky" in the sense that "other families can't afford to turn their homes into therapy gyms, and not all community support is strong. While the On Assignment with Richard Engel star and his wife Mary couldn't be happier to welcome now-4-week-old son Theodore into the family, he tells PEOPLE in an exclusive interview that it will be "difficult" to watch baby Theo pass their son Henry Thomas , 4 . Weve learned so much from so many patients with Rett syndrome, but because (Henrys) mutation was a little different, it allowed us to think slightly differently about other approaches, said Zoghbi. Were in a race against the clock no matter how much physical therapy we do, and we do a ton. Author Christina Brown explores the intersection .
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