The National Institute of Neurological Disorders and Stroke (NINDS) is a part of the U.S. National Institutes of Health (NIH). Zoghbi is in charge of conducting the research after being the one to diagnose Henry in 2017. 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. For more information or to donate, click here. / CBS News. Using a mouse model that allowed the gene to be turned off and on, researchers showed that when the gene wasnt working, the mice developed Rett-like symptoms. "One more?" He had the softest blue. "A crowd offstage erupted in thunderous applause. The NBC News Chief Foreign Correspondent shared a message to his son Henry, who passed away Aug. 9, commemorating what would have been his 7 th. Check out what's clicking on Foxnews.com. Henry and his parents appeared on "Today" in 2018 to discuss the devastating illness and how they were handling it, as well as the potential for future treatments. 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. For everyone following Henrys story, unfortunately hes taken a turn for the worse, Engel wrote on Twitter. 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. He grew up with his older brother and his parents (father and mother) in the Upper East Side of Manhattan, New York City. When you visit this site, it may store or retrieve information on your browser, mostly in the form of cookies. 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'Researchers are making amazing progress using Henrys cells to help cure RETT Syndrome so others dont have to endure this terrible disease,' he added in a follow-up tweet, including a link to the donation page. For a child who interacts with the world through touch, this contactless society we're living in has made his world smaller and less interesting. Richard Engel's 6-year-old son, Henry, died after battling Rett Syndrome. "As I was singing good morning to Henry and reconnecting after a long trip away, he looked at me, locked eye contact and said, clear as any word, 'Dada,'" Engel wrote in the essay published on Today. 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. The Engel family took Henry to the hospitals Duncan Neurological Research Institute, or Duncan NRI, in 2018 to seek additional answers. "Researchers are making amazing progress using Henrys cells to help cure RETT Syndrome so others dont have to endure this terrible disease," Engel added on Thursday, sharing a link where donors could support research at the Texas Children's Hospital. He said in a candid essay for Today that Henry was "not doing very well" considering the circumstances. During last month's State of the Union address, he lured . She added: Using Henry's cells to study Rett syndrome, when successful, can be applied to any of those diseases. IE 11 is not supported. "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.". 'Our beloved son Henry passed away. She previously worked for Healthline and Buzzfeed News. 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. The views expressed in the contents above are those of our users and do not necessarily reflect the views of MailOnline. His condition progressed and hes developed dystonia: uncontrolled shaking/ stiffness. Engel also provided a link tothe Texas Childrens Hospital, which is fundraising for the cause. 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 Jan. 30, 201803:14 Boys, who have an X and a Y, only have the mutated gene, which generally results in their death. "He had the softest blue eyes, an easy smile and a contagious giggle. Engel and Forrest welcomed their son Theo in 2019, and he admitted that it was difficult to know that their baby boy would soon pass Henry's developmental milestones. https://t.co/M8LV8SHv6r pic.twitter.com/21Ja6TOtjH. 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. Its life long, not treatable, Engel said at the time. Symptoms include an inability to control the hands, sudden distress teamed with screaming, unsteadiness, breathing problems, difficulty sleeping, slow head growth, and digestive problems. Born on Sept. 29, 2015, Henry was slow to reach certain developmental milestones as an infant. The father of two admitted he and his wife "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. That initial work gave us a lot of hope.. For an optimal experience visit our site on another browser. I called the doctor and he said, We found something. 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 . Sharing the news of Henry's passing, hosts of the "TODAY" show offered their condolences to the Engel family. He added that the goal of the drug is to help make symptoms milder and it would not reverse the condition. Special needs kids have the most expressive eyes.". There was an urgency and excitement to it," he said, adding: "Angels sang from on high. "Additionally, a number of children will get an unusual pattern of breathing and other problems, including heart rhythm problems.". Engel joined a session from a convoy in southern Ukraine to share his family's agonizing struggle with Rett Syndrome, which ended in Henry's death at age 6. He had the softest blue eyes, an easy smile and a contagious giggle, the journalist, who is married to Mary Forrest,tweeted at the time. Engel previously opened up about the heartbreaking moment he learned about his son's diagnosis in a 2018 interview with TODAY. Rett syndrome is usually seen in girls about one in 10,000 are diagnosed with the condition because the mutated gene responsible for symptoms resides on the X-chromosome. "Henry has severe special needs, and COVID has been an absolute nightmare for him and millions of other children like him. His muscles are moving. The NBC News chief foreign correspondent, 48, shared the heartbreaking news on Twitter Thursday. Through a genetic test, doctors learned he had a mutation to his MECP2 gene. Their son, Henry, was diagnosed with Rett Syndrome in 2017 when he was only two years old. August 18, 2022 / 1:26 PM It was the worst day of my life.. "Our beloved son Henry. 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. Lisa Marie Presley's only son, Benjamin Keough whose dad is her first husband, musician Danny Keough died by suicide on July 12, 2020. Tributes and condolences poured in for Engel on Twitter after he shared the heartbreaking news. Go Huda! Engel announced the death of his son Henry on Twitter in a post signed by him and his. By Mike Vulpo Aug 18, 2022 9:48 AM. When he is upset, he screams with his whole body and kicks his legs with power. TODAY remembers Richard Engels beloved 6-year-old son, Henry, a memorial page on Texas Children's Hospital's website. A cemetery posted a personal ad for a goose whose mate died. We will continue to push as hard as possible to develop treatments. 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. "His quiet fight against this terrible disease was incredible. But because it's unique is what makes it so valuable. 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. 17,637, This story has been shared 13,374 times. Engel shared the heartbreaking news in a joint statement with his wife, Mary Forrest, on Twitter Thursday. In 2020, Engel wrote an essayfor Today about how the COVID-19 pandemic had been a'nightmare' for his son who had been cut off from the therapies that had enriched his life. The first five of the six different enzyme classes (EC 1: oxidoreductases, EC 2: transferases, EC 3: hydrolases, EC 4: lyases, EC 5: isomerases, and EC 6: ligases) are sold commercially for food and feed production. Another group is looking at the possibility of using gene therapy to deliver normal copies of the gene to cells in the brain, Lieberman said. ", In another tweet on Thursday, Engel said: "Researchers are making amazing progress using Henry's cells to help cure RETT Syndrome so others don't have to endure this terrible disease. . 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. Richard and Mary Engel, with son Henry on Wednesday, October 3, 2018. She's married to Peter Engel and shares two sons, David and Richard.