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NBC News’ Richard Engel says his 6-year-old son, Henry, has died

Henry was diagnosed with Rett syndrome, a genetic brain disorder that does not have a treatment or cure, as a toddler.
/ Source: TODAY

NBC News Chief Foreign Correspondent Richard Engel announced Thursday that his son Henry, 6, has died.

“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,” Engel wrote on Twitter.

Engel shared a link to a memorial page on the Texas Children’s Hospital website, which offered more details about Henry’s life and his diagnosis of Rett syndrome, a genetic brain disorder without a treatment or a cure.

According to the National Institute of Neurological Disorders and Stroke, Rett syndrome can cause loss of use of the hands, problems with walking, seizures, slowed brain and head growth and intellectual disability.

Born on Sept. 29, 2015, Henry was slow to reach certain developmental milestones as an infant. After a series of medical exams and a genetic test, doctors discovered that he had a mutation in his MECP2 gene.

“MECP2 mutations cause Rett syndrome, 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,” the Texas Children’s Hospital page says.

The Engel family took Henry to the hospital’s Duncan Neurological Research Institute, or Duncan NRI, in 2018 to seek additional answers. Duncan NRI’s founding director, Dr. Huda Zoghbi, studied Henry’s mutation closely.

“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,” she wrote in a tribute.

Zoghbi said Henry left a lasting impression on the entire Duncan NRI team and its Rett research.

“We will continue to push as hard as possible to develop treatments. This is how we will honor his life,” she continued.

Sharing the news of Henry's passing, hosts of the "TODAY" show offered their condolences to the Engel family.

"All of us are sending our love to Richard, to Mary and to Theo," said co-host Hoda Kotb. "So many people watching our show see Richard standing in a very dangerous place covering something unaware that at home he was fighting what is the biggest battle," she said.

"I remember Mary talking about how she was caring for him, how she used to carry him in a baby Bjorn all around the house and that's how she went through a lot of his life," Kotb said.

The "TODAY" show co-host also shared part of a statement posted to Instagram by fellow co-anchor Savannah Guthrie, who wrote: "Dearest Richard and Mary, you were amazing warriors for Henry — pouring your love and care into him and fighting for him every day with everything you’ve got."

"To me, you are the personification of what it means to be a parent — to love, adore, and delight in your child, and bring every ounce of your beings to their flourishing. You’re my heroes," Guthrie wrote.

"My dear Henry," she added, "you will be missed."

"I will always remember the twinkle in your eye. We will keep fighting for you," Guthrie said.

Over the years, Engel shared regular updates about his son’s condition and was candid about the struggles and the joys of parenting a child with special needs.

In March, he shared a somber update about Henry’s health, saying his son had “taken a turn for the worse.”

“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,” he wrote on Twitter at the time.

His tribute page describes Henry as someone who “made the best of every single day and worked tirelessly in his many physical and developmental therapies.”

“He continues to be an inspiration for Dr. Zoghbi and her team as they work to find effective treatments for Rett syndrome, and they already are making significant progress with Henry’s own cells,” the post says.