Richard Engel announced the heartbreaking news that his son Henry has passed away after a battle with Rett syndrome. He was 6 years old.
“Our beloved son Henry has passed away. He had the softest blue eyes, an easy smile and a contagious giggle,” said the chief correspondent of NBC News. tweeted Thursday morning.
“We always surrounded him with love and he gave it back, and a lot more. Mary and Richard.”
Rett syndrome is a rare neurological disorder that affects the way the brain develops, according to the Mayo Clinic. This condition, which has no cure, causes a progressive loss of motor skills and language.
“Researchers are making amazing strides using Henry’s cells to help cure RETT syndrome so others don’t have to endure this terrible disease,” Engel continued in a follow-up tweet, linking to Texas Children’s Hospital, which raises money for the case .
The fundraising page states that Henry died on August 9, 2022.
Engel, 48, told earlier this summer that Henry’s condition “deteriorated” after developing dystonia, “a movement disorder in which your muscles contract involuntarily, causing repetitive or twisting movements,” according to the Mayo Clinic.
“He was in the hospital for six weeks, but is now at home and is getting love from brother Theo,” he said.
The journalist first shared in 2017 that Henry had been diagnosed with Rett syndrome and explained in 2020 how the coronavirus lockdown had worsened his condition, leaving him unable to ‘walk or talk’ as he was unable to attend school.
“The children came to him to kiss him, toss his hair and bring him toys,” Engel said. “He didn’t always react the way they expected, but the excitement in his eyes told them he enjoyed it and appreciated it. Children with special needs have the most expressive eyes.”
Engel and his wife, Mary Forrest, welcomed Henry in September 2015 and their second son, Theo, in August 2019.