Richard Engel, the head foreign reporter for NBC News, said on Thursday that his son Henry, age 6, had passed away. The fight the youngster endured with a rare genetic disease had been openly discussed by Engel and his wife.
Henry, our cherished son, died, Engel posted on Twitter. "He glowed with an infectious laugh, the sweetest blue eyes, and a simple grin. He was constantly surrounded by our affection, and he gave it to us in spades."
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 a memorial to Henry on the Texas Children's Hospital website, who was born in September 2015, his parents first noticed he wasn't meeting developmental milestones when he was only a baby.
Doctors discovered he had a mutation in his MECP2 gene through a genetic test. Rett syndrome, which mainly affects girls after their first birthday and includes cognitive deficiencies, speech loss, and a range of movement issues, is brought on by the mutation, according to the hospital.
Since 2018, Henry had received care at the Duncan Neurological Research Institute of Texas Children's Hospital.
Dr. Huda Zoghbi of the institution, who examined Henry's mutation, described him as "unique in so many ways."
In a statement, Zoghbi said, "His warm and adorable grin and the way he connected with his eyes captured my heart from the minute I met him. "It was amazing to see him fight this dreadful cancer in silence. The influence Henry had on so many of us at the Duncan NRI and on our Rett research is, however, what is most astounding. We'll keep working as hard as we can to discover cures. We shall remember his life in this manner."
Engel stated this in another tweet on Thursday: "Researchers are making fantastic progress utilizing Henry's cells to help treat RETT Syndrome so that others don't have to suffer from this dreadful condition."
Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease. To support the research: https://t.co/M8LV8SHv6r pic.twitter.com/UNnDONMtR1
— Richard Engel (@RichardEngel) August 18, 2022
Over the years, Engel has provided updates on Henry, writing articles in 2018 and 2019 on the family's triumphs and heartbreaks.
Engel said that he "finally got a 'Dada'" from his son in a subsequent piece.
"It was a long time coming, which made it all the sweeter – an unexpected prize," he wrote.
Engel posted a video of Henry at the end of May, stating that he had "taken a turn for the worse."
His condition worsened, and he eventually got dystonia, or uncontrollable rigidity and shaking. He spent six weeks in the hospital but is currently recovering at home with help from brother Theo.
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