Richard Engel announced the death of his 6-year-old son Henry after his years-long battle with Rett Syndrome, a rare genetic neurological disorder.
The NBC News chief foreign correspondent, 48, shared the heartbreaking news on Twitter Thursday. Henry, whom Richard shares with his wife Mary, died on Aug. 9, according to a memorial page on the Texas Children’s Hospital website.
“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 alongside a sweet photo of his son.
Engel linked to the memorial page in a follow-up post, writing, “Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease.”
Henry was first diagnosed with Rett Syndrome, a rare genetic neurological disorder that leads to severe physical and cognitive impairments and has no cure, as of yet, in 2017.
Engel shared an update on Henry’s health in May, noting that his condition had “progressed” and he had “taken a turn for the worse.”
In a video that Engel shared on Twitter, his son Theo, 2, affectionately kissed Henry on the forehead as Henry lay in bed. “One more?” Theo appeared to ask before giving his big brother another kiss in the sweet moment.
“For everyone following Henry’s story, unfortunately, he’s taken a turn for the worse,” the journalist captioned the touching clip. “His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness.”
At the time, he added that Henry was “now home and getting love from brother Theo” after being hospitalized for six weeks.
Engel told PEOPLE in 2019 that Henry was “lacking a conductor gene” and that a medical team at Texas Children’s Hospital was “trying to build a treatment that could help immensely.”
In 2020, Engel opened up about the realities of how the COVID-19 lockdown impacted Henry and their family. He said in a candid essay for Today that Henry was “not doing very well” considering the circumstances.
“Henry has severe special needs, and COVID has been an absolute nightmare for him and millions of other children like him. I’d add more colorful adjectives, but you get the point,” wrote Engel, adding that Henry, who was 4 at the time, “doesn’t walk or talk. He can’t feed himself efficiently. He doesn’t sit up straight. Now that he’s getting bigger, he can barely move independently.”
The father of two admitted he and his wife “were coping better before COVID,” revealing that “school was the only place where [Henry] could interact with other children,” which was a huge asset for him.