Devastating news just in.
Richard Engel, NBC’s News chief, has always been open about his son’s struggles…
And he’s just given a heartbreaking update.
Richard Engel is a father to 2 beautiful little boys.
Henry was born in September 2015, and Theodore was born in August 2019.
Back in May, Engel addressed his followers on Twitter, sharing a video of his youngest son, Theo, 2, comforting Henry.
He captioned the heartbreaking clip: “For everyone following Henry’s story, unfortunately, he’s taken a turn for the worse.”
He continued: “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.”
For those who haven’t followed Henry’s story, he suffered from Rett syndrome, which is a rare neurological disorder that causes motor function problems as well as intellectual disability.
Sadly, there is no cure, and those with the condition need constant care throughout their lives.
Following on from the first video, Engel posted another update, thanking those who commented giving their best wishes.
“Thank you, everyone, for all the kind messages, from Henry, our Mr. Handsome,” he captioned a photo of his son.
Engel and his wife, Mary Forrest, have often spoken out about their son and his condition, bringing light to the disorder.
It was understandably difficult for the pair when they first found out that their son would likely never be able to walk.
“It’s not just delay. It means life-long, permanent, untreatable physical and intellectual impairment,” Engel told TODAY back in 2018.
“Unfortunately, the more we learned about it, the worse the news got.”
They started to notice that their younger son was developing quicker than Henry.
Engel opened up, explaining how difficult it was to watch.
“You hold a baby like Theo and he’s wriggling,’’ he said.
“His muscles are moving. When he is upset, he screams with his whole body and kicks his legs with power. It’s something we never saw with Henry. … We were hoping (Henry) would grow out of it. … Then we realized it was a genetic condition, and he’s not going to get over it.”
Talking about Henry’s first words, Engel said: “It was a long time coming, which made it all the sweeter — an unexpected reward,” he wrote in 2019 for TODAY.
“To parents with typically developing children, a little ‘Dada’ may not seem like a big deal. 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.”
Now, Engel has shared the news everyone’s been dreading.
“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. Mary and Richard,” he wrote on Twitter.
Rest in peace, Henry. Our thoughts are with his family in this awful time.