NBC News Chief Foreign Correspondent Richard Engel announced Thursday that his 6-year-old son Henry died earlier this month. Henry was diagnosed with Rett syndrome, a genetic brain disorder that has no treatment or cure. The frequent Today Show guest and his wife, producer Mary Forrest, are also parents to son Theodore, who was born in August 2019.
“Our beloved son Henry passed away.He had the softest blue eyes, an easy smile, and a contagious giggle.We always surrounded him with love and he returned it, and so much more,” Engel tweeted Thursday morning. He included a link to the Texas Children’s Hospital website, where the family shared more details of Henry’s life.
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When Henry was still an infant, Engel and Forrest began noticing he was not reaching developmental milestones. A genetic test showed that he had a MEC2 gene mutation, which causes Rett syndrome. It is 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.”
In 2018, the Engels took Henry to Texas Children’s Hospital’s Duncan Neurological Research Institute, where Dr. Huda Zoghbi studied his mutation. According to the National Institute of Neurological Disorders and Stroke, Rett syndrome is estimated to affect one in every 10,000 to 15,000 live female births among all racial and ethnic groups. There is no cure for the disorder.
“Henry was special in so many ways. His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him,” Zoghmi said in a statement. “His quiet fight against this terrible disease was incredible. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on our Rett research. We will continue to push as hard as possible to develop treatments. This is how we will honor his life.”
After Henry was diagnosed, Engle frequently appeared on Today to share updates on Henry’s story. Sadly, Engel noted that Henry’s condition took a turn for the worse in May. “His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness. He was in the hospital for 6 weeks, but is now home and getting love from brother Theo,” Engel wrote on May 31.
Many of Engel’s NBC News colleagues offered their condolences, including Today anchor Savannah Guthrie. “Richard and Mary l, you were amazing warriors for Henry – pouring your love and care into him and fighting for him every day with everything you’ve got. You’re my heroes,” Guthrie tweeted. “Dear Henry, you will be missed. We will keep fighting for you. Donate here for Henry’s research.”
