Richard Engelhas long been outspoken about his son’s difficult experience with Rett Syndrome, a rare genetic neurological disorder, in the years before his death.
The NBC News chief foreign correspondent, 48, announced onTwitterThursday that his 6-year-old son had died after a years-long battle with the disorder. Henry, whom Richard shares with his wife Mary, died on Aug. 9, according to a memorial page on theTexas Children’s Hospitalwebsite.
“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.
“Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease,” he added in a follow-uptweet.
Henry wasfirst diagnosedwith 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 first spoke to PEOPLE in January 2018about his son’s diagnosis, noting at the time that his son was “probably not going to walk, probably not going to speak, probably not going to have any mental capacity beyond the level of a 2-year-old.”
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TODAY
Months later, in October 2018, the journalist opened upin a candid essay forTodayabout his family’s harrowing journey and his son’s condition.
At the time, Engel said it was getting “increasingly difficult” to help Henry keep active “because of basic physics,” as the parents had to move their son constantly to help keep him engaged in his surroundings — something that has led Engel’s wife Mary to start “working out like mad” to keep up with the physical demands of parenting.
“But Henry is making amazing progress,” Engel added in his essay. “He’s getting stronger. He’s sitting up straighter. He can focus for longer. Hedoesn’t talk, but he verbalizesmore. In addition to regular physical-therapy sessions, we put Henry for an hour every day in a ‘standing frame,’ a device that holds him upright.”
From left: Richard, Henry and Mary Engel.
A year later, Engel and his wife welcomed another little boy, sonTheodore, into their family and spoke with PEOPLE about theadjustment at home.
“We know why there is this differential. And it’s going to be hard to watch Theo pass his older brother in terms of capabilities,” he said. “That’s going to be very difficult for us to see. To see a 1-month-old very soon overcoming his almost-4-year-old brother … that’s going to be tough.”
Engel also spoke about some of the"setbacks"Henry was going through at the time, including seizures and a “compulsive repetitive motion that [was] becoming more pronounced.”
The NBC correspondent revealed that Henry had “hip problems,” sharing that there was a possibility their son would need “major surgery” in the future. He also explained that Henry was “lacking a conductor gene” and that a medical team atTexas Children’s Hospitalwas “trying to build a treatment that could help immensely.”
When the coronavirus pandemic rolled around in 2020, Engel said Henry’sexperience became a “nightmare.”
“Henry has severe special needs, and COVID has beenan absolute nightmare for himand millions of other children like him. I’d add more colorful adjectives, but you get the point,” wrote Engel in an essay forToday. “Henry, who turns 5 in September, 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.”
Richard Engel’s wife Mary and son Henry.Courtesy Richard Engel
He admitted he and his wife Mary “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.
“We burn scented candles. I do spa baths, combing his wet hair and giving him a head massage with conditioner,” he said of their activities at home amid the pandemic. “Mary sings to him, sometimes a song she made up about Coco, and works with flash cards to teach him letters, numbers and colors all day long.”
And while “it all helps,” Engel said Henry was “still bored,and his condition seems to be gettingworse” — but luckily, the family was able to continue the little boy’s therapies at home, with a $100-an-hour private therapist.
Engel shared anotherupdateon Henry’s health this past May, noting that his condition had “progressed” and he had “taken a turn for the worse.”
“For everyone following Henry’s story, unfortunately, he’s taken a turn for the worse,” the foreign correspondentcaptioneda touching clip of Henry with his brother Theo. “His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness.”
He added that Henry was “now home and getting love from brother Theo” after being hospitalized for six weeks.
Later sharing a photo of Henry flashing a grin, Richard wrote, “Thank you everyone for all the kind messages, from Henry, our Mr. Handsome.”
Clickhereto contribute to the continued research efforts at Texas Children’s Hospital’s Duncan Neurological Research Institute (Duncan NRI).
source: people.com
