Richard Engel’s son, Henry, recently passed away after a battle with Rett syndrome, and now the doting father has finally opened up about it.
Richard Engel is known for having covered the Iraq War, the Arab Spring, and the Syrian Civil War.
The journalist then became very popular and worked as NBC News’ middle eastern correspondent & Beirut bureau chief, which was a big deal for his career to flourish.
But his personal life only came to light when he actually tied the knot for the first time.
Soon after the correspondent found love again when he met Mary Forrest.
The 2 married in 2015…
And were blessed with 2 beautiful baby boys.
Henry was born in September 2015, and Theodore was born in August 2019.
Unfortunately, Henry was born with Rett syndrome…
A genetic neurological disorder that typically leads to developmental delay and
is extremely rare in males.
And since 2018, Henry has been receiving treatment at Texas Children’s Hospital’s Duncan Neurological Research Institute (Duncan NRI).
It was here that Dr. Huda Zoghbi discovered that Henry had a mutation in his MECP2 gene and that caused Henry to develop Rett syndrome in the first place.
Although, the popular NBC News chief, has always been open about his son’s struggles…
He recently made a heartbreaking announcement.
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, 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 delayed. 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.
Tributes for the little angel have been pouring in since his passing, including one from the doctor who was looking after him.
“Henry was special in so many ways. 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,” Dr. Huda Zoghbi said in a statement recently.
“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,” she concluded.
The Engel family requested those who wished to honor Henry’s memory…
To send contributions to help with the research to find a cure for RETT Syndrome, which can be donated here.
Although, Engel hasn’t really opened up about his son’s passing…
Previously the popular news anchor did reveal how it’s affected their family…
“It’s made our relationship stronger, actually.
“We’re all we’ve got,” he said.
Rest in peace, Henry Engel.