Richard Engel, NBC News chief foreign correspondent, announced Thursday that his 6-year-old son Henry has died. “Our beloved son Henry has passed away.
He had the softest blue eyes, an easy smile, and an infectious laugh. We always surrounded him with love and he gave it back and so much more. Mary and Richard,” Engel wrote on Twitter.
TODAY newspaper shared a link to a memorial page on the Texas Children’s Hospital website that provided more details about Henry’s life and his battle with Rett Syndrome, a genetic brain disorder with no treatment or cure.
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. https://t.co/M8LV8SHv6r pic.twitter.com/21Ja6TOtjH
— Richard Engel (@RichardEngel) August 18, 2022
According to the National Institute of Neurological Disorders and Stroke, Rett syndrome can cause loss of use of hands, difficulty walking, seizures, slow brain and head growth, and intellectual disabilities. After a series of medical tests and a genetic test, doctors discovered that she had a mutation in her MECP2 gene.
“MECP2 mutations cause Rett syndrome, a disorder that typically strikes girls after their first birthday, depriving them of learned skills and leaving them with cognitive deficits, speech loss, and a variety of motor difficulties,” explains the Texas Children’s Hospital site.
The Engel family took Henry to the hospital’s Duncan Neurological Research Institute (Duncan NRI) in 2018 to find more answers. The founding director of the Duncan NRI, Dr. Huda Zoghbi, studied Henry’s mutation closely. “Henry was special in many ways.
Smiles and the way he connected his eyes stole my heart from the moment I met him. His silent battle with this terrible disease was incredible,” the doctor wrote in a tribute to her little patient. According to Zoghbi, Henry left a lasting impression on Duncan’s entire NRI team and their ongoing research into Rett.
“We will continue to push as hard as we can to the maximum to develop treatments. In this way we will honor his life,” the doctor continued.
Over the years, Engel has regularly updated the TODAY team on his son’s condition and has been candid about the struggles and joys of raising a special needs child.
” None of this is to say that we don’t enjoy our time with Henry. I can I can’t imagine a child being showered with more love. We gather in our bed several times a day for what we call “cuddle parties” where we kiss, rub, praise (he loves to hear her name and be praised ), and curls her thick beautiful hair in our fingers,” she wrote at the time.
In a 2019 essay about his family, the proud dad opened up about an important milestone Henry had just reached. At that time he was 3.5 years old and had not yet called Engel “Dada”. Hearing that sweet word from his son’s mouth was a moment that Engel will never forget.
“For parents with normally developing children, a little Dada may not seem like a big deal. But for me it was a confirmation, a confirmation that he is there, he knows me, he knows his mother and I am a force for good. “in your life” and above all that he loves us” Engel wrote.
In March 2022, he shared a somber update on Henry’s health, saying his son had “deteriorated”. 6 weeks in hospital but now he is home and getting love from his brother Theo,” he wrote on Twitter at the time.
On his tribute page, Henry is described as someone who “made the most of each day and worked tirelessly through his many physical and developmental therapies.
” He continues to be an inspiration to Dr. Zoghbi and her team as they work to find treatments for Rett Syndrome and are already making significant progress using Henry’s own cells,” the post reads.