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", "His condition progressed and he's developed dystonia: uncontrolled shaking/ stiffness," he shared. NBC News chief foreign correspondent Richard Engel, who for years has been open about his son's journey with Rett syndrome, announced Thursday his 6-year-old boy has died. ", "Having a special-needs child was difficult before COVID. Georgia Slater is a writer/reporter on the Parents team at PEOPLE. There is nothing more frustrating than hearing him upset and not being able to figure out what's wrong and how to soothe him. For everyone following Henrys story, unfortunately hes taken a turn for the worse, Engel wrote on Twitter. Remembering and Honoring Henry | Duncan NRI, Honoring Henry Engel - Texas Children's Hospital Ways to Give, Do not sell or share my personal information. He also couldn't walk or even sit up straight, Engel told TODAY on Tuesday. NBC's Richard Engel confirms beloved son' Henry, 6, has died after Rett syndrome battle in heartbreaking announcement. The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline. He's averaging around one.". Richard Engel is feeling some bittersweet emotions as a new father of two. 'You hold a baby like Theo and hes wriggling. NBC News chief foreign correspondent Richard Engel's son, Henry, passed away on August 8, 2022. Experts explain what we know about the rare genetic disorder. He could only interact through 'sight, sound, and touch,' so they constantly cuddled him, praised him, massaged him, and gave him kisses. We always surrounded him with love and he returned it, and so much more. I don't know if thats because of the stress or just a progression of his condition," Engel says. Its life long, not treatable, Engel said at the time. Soon after sharing the first video, Engel tweeted another sweet photo of Henry sitting up and looking at the camera. "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.". The MECP2 gene dictates production of a protein that's important to brain function and the expression of other genes, according to the National Institutes of Health. We always surrounded him with love and he returned it, and so much more. are mostly limited to various forms of therapy, like physical therapy, speech therapy, and behavioral therapy. Jen Juneau is a digital news writer for PEOPLE since 2016. Richard Engel, NBC News' chief foreign correspondent, shared sad news Thursday that his 6-year-old son Henry has died. 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. TODAY remembers Richard Engels beloved 6-year-old son, Henry, a memorial page on Texas Children's Hospital's website. Charlotte Triggs. By Aurelie Corinthios. This material may not be published, broadcast, rewritten, Pittsburgh woman missing for 31 years found alive in Puerto Rico, 7 hospitalized after plane makes emergency landing. MEGHAN MCCAIN: Ohio in a poisonous soup. He also added, "After a long trip apart, I was singing "Good Morning" to Henry when he looked at me, locked my eyes, and said, as clear as any . Tributes and condolences poured in for Engel on Twitter after he shared the heartbreaking news. Engel, 45, opened up on the "Today" show Friday and penned a loving essay about his son Henry finally saying "Dada" after being diagnosed with Rett Syndrome, a rare genetic neurological. 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. Their son, Henry, was diagnosed with Rett Syndrome in 2017 when he was only two years old. He was diagnosed with a condition called Rett Syndrome, which is almost exclusively diagnosed in girls, but he was one of the rare boys who was forced to fight it. When he is upset, he screams with his whole body and kicks his legs with power. Even as the boy approached the second year of his life, he couldnt talk or clap his hands. Usually severe bending of the spine scoliosis develops, as well as losing the ability to walk. 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. 'Its not just delay. Therapy and Other Drugs provides a first-hand look at mental health, substance abuse, and healing.from the therapist's perspective. 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). We are no longer accepting comments on this article. NBC News chief foreign correspondent Richard Engel announced Thursday that his 6-year-old son, Henry, had died after being diagnosed as an infant with a rare genetic neurological disorder called Rett Syndrome. For the latest on COVID-19, readers are encouraged to use online resources from CDC, WHO, and local public health departments. His quiet fight against this terrible disease was incredible,she wrote in a tribute. Fox News Flash top headlines are here. The journalist is also fluent in Italian and Spanish and speaks and reads Arabic fluently. ", 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. So fare ligases are not used in food and feed production. 'He did astronaut therapy in a soft-play room, spinning on a large Lazy Susan to let him feel a mild centrifugal force,' Engel added. Engel has spoken out about his son's health since he was first diagnosed with Rett Syndrome in 2017. NBC News Chief Foreign Correspondent Richard Engel announced on Aug. 18 that his son Henry, 6, had died. "His condition progressed and hes developed dystonia: uncontrolled shaking/stiffness. 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In Henrys case, his mutation was so unique that he was actually the first person to have it, Zoghbi said. document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); Richard Engel is trying to find the good on a very sad day. ", "We have braces for his arms that prevent him from doing it, but when they're on he can't do much with his hands at all, so there are trade-offs," he adds. In March, heshared a somber update about Henrys health,saying his son had taken a turn for the worse.. I do spa baths, combing his wet hair and giving him a head massage with conditioner," he writes. They were told Henry would likely never be able to walk, talk, dress himself, or have the mental capacity beyond a toddler. August 18, 2022, 1:04 PM. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on . "One more," the two-year-old says in the video before leaning in to give Henry, now six years old, another kiss. Unfortunately, the more we learned about it the worse the news got.. 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. Lisa Marie Presley's only son, Benjamin Keough whose dad is her first husband, musician Danny Keough died by suicide on July 12, 2020. "I think Henry really epitomizes how patients inspire so many people," she added. According to Dr. Zoghbi, Henry's treatment and diagnosis boosted research on the disease. Its controlling what other genes and proteins are made within the cell in response to stimuli.. August 18, 2022 / 1:26 PM He had the softest blue eyes, an easy smile and a contagious giggle. Engel shared the heartbreaking news in a joint statement with his wife, Mary Forrest, on Twitter Thursday. Henry has Rett syndrome, which is extremely rare in boys. Richard Engel, NBC News' chief foreign correspondent, shared sad news Thursday that his 6-year-old son Henry has died. Legal Statement. On Thursday, Engel shared that her team of researchers at Duncan NRI are using Henry's cells to help cure Rett Syndrome. "Our beloved son Henry. 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 post says. "Henry, who turns 5 in September, doesn't walk or talk. 2022 CBS Interactive Inc. All Rights Reserved. Many of Engels colleagues, including Hoda Kotb and Savannah Guthrie, honored the young boys sweet spirit following his tragic death. The NBC News Chief Foreign Correspondent and his wife Mary Forrest appeared on Today to share an update about their 3-year-old son Henry Thomas ' battle with Rett syndrome, a rare genetic neurological disorder that leads to severe physical and cognitive impairments and, as of now . ", Sophie Reardon is a News Editor at CBS News. Since the start of the pandemic, his tremors and body shakes had become more pronounced. NBC News' Richard Engel reveals his son's heartbreaking medical journey. 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. 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. 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. Henry Engel was only 6-years old at the time of his death. Henry's mutation is unique in the world. Some of the information in this story may have changed after publication. He rode a horse named Coco with the help of two attendants, and not only did Henry visibly enjoy the rides, but the rocking movement helped strengthen his core. J. Assmann On the throne at Jerusalem sat Josiah, a king who was open to the new religious ideas. 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