It means life long, permanent, untreatable physical and intellectual impairment, Engel said on TODAY in 2018. Henry notably passed away on August 9, 2022. "Our beloved son Henry passed away. NBC News correspondent Richard Engel announces death of 6-year-old son It means lifelong, permanent, untreatable physical and intellectual impairment,' Engel said on the Todayshow in 2018. 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. Richard Engel, NBC News' chief foreign correspondent, shared sad news Thursday that his 6-year-old son Henry has died. Born in September 2015 . Richard Engel Announces Death of 'Beloved' 6-Year-Old Son Henry - Peoplemag He can't feed himself efficiently. The son of NBC News chief correspondent Richard Engel, Henry died on August 8, 2022. The institute's Dr. Huda Zoghbi, who studied Henry's mutation, called him "special in so many ways. Jen Juneau is a digital news writer for PEOPLE since 2016. According to Dr. Zoghbi, Henry's treatment and diagnosis boosted research on the disease. NBC's Richard Engel on Battling Rare Disease - National Press Henry succumbed to Rett Syndrome on August 9, and his family is asking anyone to donate to research for a cure for Rett Syndrome. "Our beloved son Henry passed away. I think the technology, and the genetic approaches, and everything thats available, empowers us. The National Institute of Neurological Disorders and Stroke (NINDS) is a part of the U.S. National Institutes of Health (NIH). We love you,' wrote Today host Hoda Kotb, while weather anchor Al Roker added:'What a strong little man who touched every one who witnesses his bravery. (WCMH/NBC) Henry, the 6-year-old son of NBC News Chief Foreign Correspondent Richard Engel, has died after a long battle with Rett Syndrome, a genetic brain disorder that does not have a. It worked. Richard Engel and Wife Mary Welcome Baby Boy Theodore After First Son's Engel announced the death of his son Henry on Twitter in a post signed by him and his. Patients may also experience dystonia, where muscles contract involuntarily and the limbs or trunk are held stiffly in an unusual position, he added. He was previously diagnosed with Rett syndrome. ", "Having a special-needs child was difficult before COVID. This gene works inside the nucleus the control center of the cell, Neul said. TODAY remembers Richard Engels beloved 6-year-old son, Henry, According to the National Institute of Neurological Disorders and Stroke, NBC News Richard Engel reveals his sons heartbreaking medical journey, Engel shared regular updates about his sons condition, shared a somber update about Henrys health. Other families, doctors and advocates for children with disabilities say the disruption caused by COVID is reverberating throughout the entire special-needs community. My deepest condolences to you and all your family.'. So far, the treatments for the incurable conditionare mostly limited to various forms of therapy, like physical therapy, speech therapy, and behavioral therapy. Henry has Rett syndrome, which is extremely rare in boys. In a personal essay for NBC News, Richard Engel's wife Mary Forrest Engel looked back on the week she spent with her son Henry after he died at age six following a battle with Rett syndrome . Privacy Notice Engel has spoken out about his son's health since he was first diagnosed with Rett Syndrome in 2017. This story has been shared 57,915 times. Richard Engel and his wife, Mary Forrest, noticed their son was having trouble with his cognitive and motor skills. He had the. Terms of Use "It was a long time coming, which made it all the sweeter an unexpected reward," he wrote. His muscles are moving. The 48-year-old journalist's oldest son was diagnosed with Rett Syndrome, a genetic mutation that leads to severe cognitive deficits and physical impairment. His hand-mouthing had also become more frequent, and they had to either put his arms in braces or socks over his hands to keep him from chewing his skin until it bleeds. ", Engel also spoke to other parents who have children with special needs about how they are coping, recognizing that "Henry's situation is not unique. ", "His condition progressed and he's developed dystonia: uncontrolled shaking/ stiffness," he shared. "Our beloved son Henry. Richard Engel Writes Emotional Essay After 3-Year-Old Son Says 'Dada Theo appeared to ask before giving his big brother another kiss in the sweet moment. Oh - how these liberal minds work! There may be a potential for actually making things better or even significantly reversing the disease. A cemetery posted a personal ad for a goose whose mate died. "It's typically not inherited. Zoghbi said Henry left a lasting impression on the entire Duncan NRI team and its Rett research. Richard Engel paid tribute to his late son, Henry, who would have turned 7 years old on Thursday. He had the softest blue. Engel linked to the memorial page in a follow-up post, writing, "Researchers are making amazing progress using Henry's cells to help cure RETT Syndrome so others don't have to endure this terrible disease.". Engel also opened up about the feeling of watching his younger son surpass Henry in developmental milestones. 'Its not just delay. The perfect tummy control bodysuit, a popcorn gadget, more bestsellers starting at $8. They were told Henry would likely never be able to walk, talk, dress himself, or have the mental capacity beyond a toddler. Share ; 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 award-winning Engel has been with NBC News since 2003 and became its chief foreign correspondent in 2008. Engel has shared updates on Henry over the years, writing essays in 2018 and 2019 about both the joys and heartbreaks the family experienced. 'We are all heartbroken, Richard and also have been and continue to be inspired by your love and devotion,' MSNBC host Chris Hayes responded. "He didnt just say it once, but two or three times. NBC News' Richard Engle announces death of son Henry, 6, who had - al Dr. Huda Zoghbi https://t.co/gr65xO8GSk and her team discovered the origin of RETT Syndrome, now with Henrys help she wants to beat it. Therapy and Other Drugs provides a first-hand look at mental health, substance abuse, and healing.from the therapist's perspective. Henry had been treated at Texas Children's Hospital's Duncan Neurological Research Institute since 2018. At the end of May, Engel had tweeted a video of Henry, writing that he had "taken a turn for the worse. Why Biden might not run for reelection | CTV News https://t.co/M8LV8SHv6r pic.twitter.com/21Ja6TOtjH. 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. In the later essay, Engel shared that he "finally got a 'Dada'" from his son. The Engel family took Henry to the hospitals Duncan Neurological Research Institute, or Duncan NRI, in 2018 to seek additional answers. The comments below have not been moderated. Mary Forrest, wife of NBC News chief foreign correspondent Richard Engel, has opened up about the heartbreaking final days she spent with her six-year-old son Henry's body before he was cremated.The couple's oldest child passed away last August after a years-long battle with Rett Syndrome, a genetic mutation that leads to severe cognitive deficits and Theres one caveat with gene therapy, Lieberman said. email us; help; view portfolios; premium stock; news; about Richard Engel Says His Son Henry Has 'Taken a Turn for the Worse' Due to Rare Neurological Disorder, Richard Engel Announces Death of 'Beloved' 6-Year-Old Son Henry, Everything Richard Engel Said About 'Beloved' Son's Journey with Rett Syndrome Before His Death, Richard Engel Celebrates Son's 5th Birthday, Shares Message to All Kids with Rett Condition, Richard Engel's Younger Son, 1, Takes His First Steps as Big Brother Henry Is 'Cheering' Him On, Richard Engel Sends 'Love' to 'Special Needs Kids' amid Coronavirus with Photo of Son Henry, 4, Richard Engel Honors Late Son Henry on His 7th Birthday, Gives 'Big Thank You' for Support, Hoda Kotb Gets Emotional as She Shares Tribute After 'Heartbreaking' Death of Richard Engel's Son, Savannah Guthrie Posts Beautiful Tribute to Richard Engel and Wife Mary After Son Henry's Death, How One Family Found Hope Amid the Pain of Their Son's Rare Brain Disorder: 'There's Going to Be a Better Day', Great-Grandmother, 73, Reunites with Family After 5-Month Battle with Coronavirus: 'So Happy', Criss Angel Gives an Update on 6-Year-Old Son's Cancer Battle During Coronavirus Pandemic, Rett syndrome, a rare genetic neurological disorder, revealing that "school was the only place where. The syndrome is typically found in girls, and cases in boys are rare, often resulting in death in utero or shortly after the boy is born. There exists another disorder, described first by Huda Zoghbi, if there are too many copies of the MeCP2 gene. Never miss a story sign up for PEOPLE's free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from juicy celebrity news to compelling human interest stories. He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.. Check out what's clicking on Foxnews.com. In March, heshared a somber update about Henrys health,saying his son had taken a turn for the worse.. David Rutz is a senior editor at Fox News. We were hoping (Henry) would grow out of it. "The kids would come up and kiss him, tussle his hair and bring him toys," Engel explains. Unfortunately, there isnt any disease-modifying therapy at the moment thats approved, but theres a lot of active research going on, said Patterson, adding that physical or occupational therapy can help with symptoms, such as loss of motor skills. We are no longer accepting comments on this article. One of the first drugs for specifically for Rett syndrome has finished clinical trials and is awaiting review by the Food and Drug Administration, said Parikh. His muscles are moving. MEGHAN MCCAIN: Ohio in a poisonous soup. Richard announced Henry's death with a post on Twitter on Aug. 18. NBC's Richard Engel and his wife Mary Forrest announced the death of their beloved 6-year-old son, Henry, who bravely battled a rare disease called Rett syndrome. You hold a baby like Theo and hes wriggling, he told People in 2019. 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. Handsome.'. Henry could only interact through 'sight, sound, and touch,' so Engel and Forrest constantly cuddled him, praised him, massaged him, and gave him kisses, Engel and Forrest welcomed their son Theo in 2019, and he told People at the time that it was difficult to know that their baby boy would soon pass Henry's developmental milestones, A large part of Henry's daily routine was physical therapy because movement was essential for him to build strength, 'He did music therapy and enjoyed touching the vibrating guitar strings.