NBC anchor Richard Engel is mourning the loss of his 6-year-old son, Henry, after a long battle with Rett syndrome, a rare genetic neurological disorder. He announced the death of his child on Thursday, August 18, in a statement posted on social media. Henry died on August 9.
“Our beloved son Henry passed away,” the statement read. “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. Mary and Richard.”
Richard shared Henry with his wife, Mary Forrest, whom he married in 2015. They also have another child together, son Theo, who was born in August 2019. The news correspondent previously provided an update on his eldest son’s health aid the COVID-19 pandemic in an August 2020 essay for Today.
“Henry, who turns 5 in September, doesn’t walk or talk,” Richard wrote at the time. “He can’t feed himself efficiently. He doesn’t sit up straight. Now that he’s getting bigger, he can barely move independently. When he was small, he could do a kind of army crawl, propelling himself with his elbows and pushing forward with one knee. Now he’s too heavy for that.”
In May 2022, the journalist shared a video on Twitter of Henry sharing a tender moment with his brother as he lay in bed.
“For everyone following Henry’s story, unfortunately, he’s taken a turn for the worse,” Richard wrote. “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.”
Henry was diagnosed with Rett syndrome as an infant after undergoing genetic testing. Since then, Richard has been very candid about the struggles of watching his eldest son battle the condition. He did, however, experience a moment of sheer happiness in March 2019 when his little one said, “Dada,” for the first time. Richard described the experience to Today after witnessing Henry’s special milestone.
“To parents with typically developing children, a little Dada may not seem like a big deal,” the television personality said. “But for me, it was a validation, an acknowledgment that he’s in there, knows me, knows that his mother and I are forces for good in his life and above all, that he loves us.”
The Texas Children’s Hospital set up a fundraiser in Henry’s honor to help support efforts in finding a cure for Rett syndrome. Dr. Huda Zoghbi, who met Henry in 2018 while studying his mutation at the hospital’s Duncan Neurological Research Institute, shared an emotional statement about his passing.
“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,” she said. “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.”