WASHINGTON — The six-year-old son of NBC News Chief Foreign Correspondent Richard Engel has died.
Engel announced the death of his son Henry on Twitter in a post signed by him and his wife.
"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 wrote.
Henry, born on Sept. 29, 2015, was diagnosed as an infant with a rare genetic mutation that caused Rett syndrome.
Engel linked to a post on the Texas Children's Hospital website that gave details about Henry's life and battle with Rett syndrome.
His parents realized in his infancy that Henry wasn't meeting developmental milestones, according to the post. Genetic testing revealed a mutation in his MECP2 gene, which caused Rett syndrome.
The neurodevelopment disorder is seen almost exclusively in females and more rarely in males, according to the International Rett Syndrome Foundation. It causes cognitive deficits, loss of speech and difficulty with motor skills.
There is no cure or treatment for Rett syndrome.
Dr. Huda Zoghbi, who first discovered the connection between the MECP2 gene and Rett syndrome, worked with Henry and studied his disease at TCH's neurological research institute.
“Henry was special in so many ways," Zoghbi wrote in a tribute to her young patient. "His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him. 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.”
Engel has been public about Henry's health battl3e and the difficulties of parenting a child with special needs. He regularly posted updates about his son's life to Twitter, and spoke about Henry with the TODAY show.
In March 2022, he revealed that Henry's condition had taken a turn for the worse. He was hospitalized for six weeks.
Zoghbi said she and her team are making significant progress toward finding a treatment for the disorder with Henry's cells.
According to the post, the Engel family asked anybody interested in honoring Henry's memory to donate to TCH's research into the disease.
