Richard Engel, the chief foreign correspondent at NBC News, announced Thursday that Henry, his 6-year-old child, has died. Engel and his wife were open about their son’s struggle with rare genetic conditions. Engel posted on Twitter, “Our beloved son Henry died.” Engel wrote on Twitter, “Our beloved son Henry passed away.” He was always loved and returned the love.
Henry was only a baby when his parents realized that he wasn’t reaching the developmental milestones. According to Henry’s tribute on the Texas Children’s Hospital site,
Doctors discovered that he was carrying a mutation in his MECP2 gene through a genetic test. Rett syndrome is a condition that affects young girls. It causes cognitive impairments, speech loss, motor difficulties, and cognitive deficits.
Henry was treated at Texas Children’s Hospital’s Duncan Neurological Research Institute for treatment since 2018.
Henry’s mutation was studied by Dr. Huda Zoghbi of the institute. He was called “special in so many aspects”
Zoghbi stated that Zoghbi’s warm smile and connection with his eyes “stole my heart right from the moment I met him.” His quiet struggle against this horrible disease was amazing. The most remarkable thing about Henry’s impact on us all at the Duncan NRI as well as on our Rett research is his quiet fight against this terrible disease. We will keep pushing to find treatments. We will do this to honor his life.
Engel also tweeted on Thursday: “Researchers making incredible progress using Henry’s cell to cure RETT Syndrome so that others don’t have this terrible disease.”
Engel shared updates about Henry throughout the years and wrote essays in 2018 & 2019 about the joys & heartbreaks that the family experienced.
Engel wrote that he had “finally gotten a ‘Dada” from his son in the second essay.
He wrote, “It took a long time to get it,” which made it even sweeter.
Engel tweeted a clip of Henry at the end of May, stating that he had “taken an unfortunate turn.”
He shared that his condition had progressed and that he has dystonia, which is uncontrolled shaking/ stiffness. He was admitted to the hospital for six weeks. But he is now at home receiving love and support from his brother Theo.