Henry was diagnosed with Rett syndrome, a rare neurological disorder.
NBC News' chief foreign correspondent Richard Engel's 6-year-old son, Henry, has died following a battle with Rett syndrome. The 48-year-old anchor shared the news via Twitter on Thursday.
“Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle,” Engel, who shares Henry with wife Mary Forrest, wrote over a picture of Henry. “We always surrounded him with love and he returned it, and so much more. Mary and Richard.”
In another tweet, Engel added that Henry’s cells are being used for further research into the rare disease. “Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease,” he wrote.
Underneath the announcement was a link to the Texas Children’s Hospital site, which had a memorial for the young child. The page shared that Henry died on Aug. 9.
“Henry Engel – a beautiful child and a true hero for fighting Rett syndrome and inspiring researchers to find a treatment – sadly passed away on August 9, 2022,” read the message.
The site shared a little more background and insight into Henry’s diagnosis prior to his death.
“Henry Engel was born on Sept. 29, 2015. When he was still an infant, his parents noticed that he was not reaching his developmental milestones, and he underwent numerous medical exams to discover the cause,” read the statement. “A genetic test ultimately provided the answer: Henry 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 message continued, “In 2018, Henry and his family came to Texas Children’s Hospital’s Duncan Neurological Research Institute (Duncan NRI). Since then, Henry’s mutation has been studied by Dr. Huda Zoghbi, who discovered that MECP2 mutations cause Rett syndrome.”
The Mayo Clinic defines Rett syndrome as “a rare genetic neurological and developmental disorder that affects the way the brain develops. This disorder causes a progressive loss of motor skills and language. Rett syndrome primarily affects females.”
According to the site, most babies with Rett syndrome appear to develop as expected in the first six months of their lives, before their motor skills begin to regress. Over time, children develop problems with controlled movement and their muscles, coordination and communication.
“Rett syndrome can also cause seizures and intellectual disabilities," the Mayo Clinic notes. "Unusual hand movements, such as repetitive rubbing or clapping, replace purposeful hand use.”
There is no cure for the diagnosis.
In May, Engel shared a sweet video of Henry and his 2-year-old brother, Theo. In the clip, Theo gives his brother kisses as he lies in bed. At the time, Engel said that Henry’s condition regressed and that he had just returned home after six weeks in the hospital.
“For everyone following Henry’s story, unfortunately he’s taken a turn for the worse,” Engel wrote at the time. “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.”
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