Richard Engel has revealed the passing of his son, age 6, who suffered from Rett syndrome
On Thursday, Richard Engel, the chief foreign correspondent for NBC News, broke the tragic news that his son Henry, age 6, had passed away. The child’s struggle with a rare genetic disease was something that Engel and his wife had discussed openly.
Engel tweeted, “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.”
According to a tribute posted on the Texas Children’s Hospital website, Henry’s parents noticed he was not meeting developmental milestones when he was just a few months old. Henry was born in September 2015.
The genetic analysis revealed a mutation in the MECP2 gene. Rett syndrome is brought on by this mutation and is “a disorder that typically affects girls after their first birthday, robbing them of learned skills and leaving them with cognitive deficits, loss of speech, and a variety of motor difficulties,” as the hospital puts it.
Since 2018, Henry has been receiving care at the Duncan Neurological Research Institute of Texas Children’s Hospital.
Henry is “special in so many ways.” according to Dr. Huda Zoghbi, who investigated his mutation at the institute.
“His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him,” Zoghbi said in a statement.
On Thursday, Engel tweeted, “Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease.”
Engel has been writing essays in 2018 and 2019 on the happy and sad times in the family’s life as they update readers on Henry’s progress.
Later, in another piece, Engel wrote about how he “finally got a ‘Dada'”
“It was a long time coming, which made it all the sweeter — an unexpected reward,” he wrote.
Engel tweeted a video of Henry at the end of May with the caption “taken a turn for the worse.”
“His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness,” he shared. “He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.”