NBC News' Richard Engel reveals his son's heartbreaking medical journey Jan. 30, 201803:14 Boys, who have an X and a Y, only have the mutated gene, which generally results in their death. Rett syndrome is estimated to affect one in every 10,000 to 15,000 live female births worldwide, according to the National Institutes of Health. are mostly limited to various forms of therapy, like physical therapy, speech therapy, and behavioral therapy. There is therapy, and there are other drugs. I called the doctor and he said, We found something. Engel is well-known for his reporting on the Iraq War, the Arab Spring, and the Syrian Civil War. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on our Rett research. NBC's Richard Engel confirms beloved son' Henry, 6, has died after Rett syndrome battle in heartbreaking announcement. MECP2 mutations cause 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 Texas Childrens Hospital page says. The genetic mutation leads to severe cognitive deficits and physical impairment, There is no cure for the mutation, which stops the brain from growing properly. A heartbreaking loss. In 2018, Engel recalled the shock of learning that his son will likely never be able to perform tasks such as walking or dressing himself. This story has been shared 57,915 times. Powered and implemented by FactSet Digital Solutions. Longtime NBC News foreign correspondent Richard Engel announced Thursday that his 6-year-old son Henry had died after a lifelong battle with a rare brain disorder. (Nathan Congleton/NBCU Photo Bank/NBCUniversal via Getty Images), Fox News Flash top headlines for August 18. The NBC News chief foreign correspondent paid tribute to his son Henry, who died last month from a neurological disorder, on what would have been his 7th birthday. / CBS News. Trump wants 'Freedom Cities' where cars can fly, parents get 'BONUSES' for having babies and huge monuments are built to 'true American heroes' in 'Quantum Leap' vision for the future, US soldier is sentenced to 45 years in jail for conspiring with Satanic neo-Nazi group to launch jihadi massacre on his OWN platoon as it guarded secret military site, Tom Sizemore, 61, dies after aneurysm and stroke: Action star known for Saving Private Ryan, Black Hawk Down and Born on the Fourth of July battled addiction, Floridians are told not to wash their face with tap water over brain-eating bug fears: Public health experts issue warning after man died from amoeba-infested water. Its not just delay. 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The lifespan for typical Rett syndrome (in women) now is much better than it used to be, with individuals surviving into their 20s to 50s, said Parikh, adding that if the problem with the MECP2 gene is more severe, as it often is in males, life expectancy is much lower. It is a new change that happens in the baby's DNA right after conception. You've successfully subscribed to this newsletter! Its life long, not treatable, Engel recalled the doctor telling him. Mutual Fund and ETF data provided by Refinitiv Lipper. So you have to be able to adjust the protein level so theres enough, but not too much., While a cure isnt likely to happen soon, I think were on the right path, Zoghbi said. To find out more contact us at 800.838.9199 . "We always surrounded him with love and he returned it, and so much more.". Published on March 15, 2019 12:25 PM. "So many people watching our show see Richard standing in a very dangerous place covering something unaware that at home he was fighting what is the biggest battle," she said. Shortly after, they brought Henry to a physician who came back with the horrific news. Its very, very severe. "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. Richard Engel and his wife, Mary Forrest, noticed their son was having trouble with his cognitive and motor skills. Most families have faced some semblance of hardship as social distancing measures surrounding the ongoing coronavirus (COVID-19) pandemic continue and Richard Engel is no different. Richard's Son's Disease Has No Cure. Mutual Fund and ETF data provided by Refinitiv Lipper. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on our Rett research. As far as we know, there's not a specific cause for it, and it seems to be random," Dr. Sumit Parikh, a neurologist with the Center of Pediatric Neurosciences at the Cleveland Clinic, told TODAY. Richard Engel is mourning the loss of a beloved family member. Limbs become floppy, epilepsy may develop and there may be weight loss and teeth-grinding. Henry Engel was only 6-years old at the time of his death. One of the earliest signs in a typical case is the growth of the head slows down, and that (is) classically seen before theres any change in development, said Patterson, urging parents to make sure their child's head is measured regularly at checkups. As Alex is jailed for horrific executions of his wife and son rumors abound in the sleepy South Carolina town of Walterboro - and locals say 'most people don't believe he is the killer', Woman, 31, who had sex with 13-year-old boy and then became pregnant with his child will serve NO jail time in plea deal, 'Are y'all OK in LA?!' The diagnosis was Rett Syndrome, meaning Henry's development may never advance beyond that of a toddler. You hold a baby like Theo and hes wriggling, he told People in 2019. 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. NBC News' Richard Engel reveals his son's heartbreaking medical journey. Richard Engel announced the heartbreaking news that his son Henry has died after a battle with Rett syndrome. The third stage, the plateau,' begins between age three and ten. 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. During the first stage, from about the age of six to 18 months, a baby slows in development, loses interest in play, stops making eye contact, starts walking awkwardly, and makes repetitive hand movements. He doesn't sit up straight. We will keep fighting for you," Guthrie said. Their oldest son had started having seizures that year, and they were trying to manage his compulsive repetitive motion, which had become more pronounced. However, many parents say children are less distressed and show more interest in their surroundings. IE 11 is not supported. One little boys unique form of a debilitating genetic disorder may help researchers find a treatment for him and others. By clicking Accept All Cookies, you agree to the storing of cookies on your device to enhance site navigation, analyze site usage, and assist in our marketing efforts. His muscles are moving. Part of the Daily Mail, The Mail on Sunday & Metro Media Group, Kellyanne Conway and husband George SPLIT after 22 years following admission in her 2022 memoir that her husband's criticism of Trump was a betrayal, Where IS Gavin? The TV helps, but you can only put on cartoons for so many hours a day. I got back into this convoy, shaking. His reporting appears across NBC and MSNBC platforms. Richard Engel, chief foreign correspondent for NBC News, announced on Thursday that his six-year-old son Henry had passed away from a rare neurological disorder. His condition progressed and hes developed dystonia: uncontrolled shaking/ stiffness., Engel continued, He was in the hospital for 6 weeks, but is now home and getting love from brother Theo., According to the Mayo Clinic, dystonia is a movement disorder in which your muscles contract involuntarily, causing repetitive or twisting movements.. Oh - how these liberal minds work! Get browser notifications for breaking news, live events, and exclusive reporting. But for me it was a validation, an acknowledgement that hes in there, knows me, knows that his mother and I are forces for good in his life, and above all, that he loves us., according to the National Institute of Neurological Disorders and Stroke, Thailand's 'most beautiful transgender woman' and husband wear $580K in attire at extravagant wedding, Desperate mountain residents trapped by snow beg for help; 'We are coming,' sheriff says, U.S. court won't require FAA to make airplane seat size, spacing rules, Convicted killer Alex Murdaugh's new mugshot revealed after double life sentence, Rebel Wilson says she was banned from Disneyland for 30 days for taking a bathroom selfie. Currently, there is no cure and only the symptoms are treated. For an optimal experience visit our site on another browser. ", RELATED VIDEO: Richard Engel Opens Up About his Fears for Son Henry as he Battles Rett Syndrome Plus Their Tough Decision to Have More Kids, "We burn scented candles. Engel and Forrest had to watch Henry constantly and stop him from putting his hands in his mouth and scratching his eyes because he could have hurt himself. There may be a potential for actually making things better or even significantly reversing the disease. Their son, Henry, was diagnosed with Rett Syndrome in 2017 when he was only two years old. Children with Rett Syndrome typically start out growing normally and then experience a slowing of development toward the middle of the first year of life, and after that point, they may take longer to reach or never attain developmental milestones, Patterson said. He had the softest blue eyes, an easy smile and a contagious giggle. "He continues to be an inspiration for Dr. Zoghbi and her team as they work to find effective treatments for Rett syndrome, and they already are making significant progress with Henrys own cells.". The NBC News chief foreign correspondent paid tribute to his son Henry, who died last month from a neurological disorder, on what would have been his 7th birthday. He's averaging around one.". 2023 FOX News Network, LLC. The syndrome is a rare genetic disorder with no known cure that prevented Henry from developing in the long term. Now the challenge is figuring out how you do that. I think the technology, and the genetic approaches, and everything thats available, empowers us. The mutation stops the brain from growing properly, and according to WebMD, symptoms include slowed growth, issues with hand movements, a lack of language skills, problems with muscles and coordination, and trouble breathing. Sharing the news of Henry's passing, hosts of the "TODAY" show offered their condolences to the Engel family. "He's bored. He had the softest blue eyes, an easy smile and a contagious giggle. She works and manages an antique store. "Henry, who turns 5 in September, doesn't walk or talk. But its not functioning fully and not at 100 percent at normal level.. We will continue to push as hard as possible to develop treatments. "Our beloved son Henry passed away. Henry Engel, the six-year-old son of NBC News' Richard Engel, has sadly succumbed to a rare, genetic brain disorder. Richard Engel and his wife Mary are coping with their 2-year-old son Henry's devastating diagnosis with Rett Syndrome. That means about 50 percent of their cells will make normal copies of the protein MeCP2, which is present in cells throughout the body, especially brain cells. A few months ago, the NBC News chief foreign correspondent shared that his oldest son had developed dystonia, which is characterized by involuntary muscle contractions and stiffness, Engel shared a video of his three-year-old son Theo lying in bed with his big brother, Theo sweetly leaned over and gave Henry a kiss on the forehead while he was lying down, 'His condition progressed and hes developed dystonia: uncontrolled shaking/ stiffness,' he explained on Twitter. ", Email us atexclusive@the-sun.comor call212 416 4552. 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Engel wrote a personal essay in 2019 that shared the emotional triumph when his son finally said "dada" at the age of three years old. The protein produced by his cells is somewhat functional, albeit at lower levels than optimal. The award-winning Engel has been with NBC News since 2003 and became its chief foreign correspondent in 2008. The National Institute of Neurological Disorders and Stroke (NINDS) is a part of the U.S. National Institutes of Health (NIH). One of those scientists is Dr. Huda Zoghbi, director of the Jan and Dan Duncan Neurological Research Institute at Texas Childrens Hospital, who worked with the Engel family and got to know Henry. Caroline Kee is a health reporter for TODAY Digital. Through a genetic test, doctors learned he had a mutation to his MECP2 gene. "Our beloved. Their son, Henry, was diagnosed with Rett Syndrome in 2017 when he was only two years old. The syndrome is a rare genetic disorder with no known cure that prevented Henry from developing in the long term. In a video that Engel shared on Twitter, his son Theo, 2, affectionately kissed Henry on the forehead as Henry lay in bed. French family sues Airbnb after 19-month-old daughter dies from fentanyl overdose while taking a nap at Miami rental - after previous tenants held cocaine-fueled party, Walgreens says it will NOT sell abortion pills in 20 Republican-controlled states - even where it is still legal. He added that the goal of the drug is to help make symptoms milder and it would not reverse the condition. Some groups are working on a treatment that would help girls, by turning on the working copy of the gene in cells currently running with the dysfunctional one, said neurologist Dr. David Lieberman, director of the Rett Clinic at Harvard Medical Schools Boston Childrens Hospital. His condition progressed and hes developed dystonia: uncontrolled shaking/ stiffness. Tributes and condolences poured in for Engel on Twitter after he shared the heartbreaking news. For everyone following Henrys story, unfortunately hes taken a turn for the worse, Engel wrote on Twitter. The news of Henrys passing came just months after Engel revealed his sons health had taken a turn for the worse., For everyone following Henrys story, unfortunately, hes taken a turn for the worse, the NBC News correspondenttweeted back in June. He had the. There is currently no treatment or cure. The journalist previously announced that Henry died from Rett syndrome a rare neurological disorder that affects the way the brain develops on Aug. 18, just five years after he was diagnosed with the incurable disease. Now it's dangerous for the children and for the mental health of the parents," he says. Market data provided by Factset. Many of Engels colleagues, including Hoda Kotb and Savannah Guthrie, honored the young boys sweet spirit following his tragic death. For an optimal experience visit our site on another browser. Go Huda! Dr. Huda Zoghbi shared a tribute to Henry at the donor site, having studied his mutation and worked with him at the Texas hospital's Duncan Neurological Research Institute.
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