NBC News’ Richard Engel announces death of 6-year-old son Henry

Henry suffered from Rett Syndrome, a genetic neurological disorder without a cure

(NBC)

NBC News chief foreign correspondent Richard Engel announced on Thursday morning that his six-year-old son, Henry, has died due to a rare neurological disorder.

“Our beloved son Henry passed away,” Mr Engel wrote in a tweet signed both by himself and his wife Mary Forrest. “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.”

Mr Engel’s tweet included a link to a Texas Children’s Hospital page titled “Remembering and Honoring Henry.” It includes a link for people to make donations to support research in Henry’s name.

Mr Engel and Ms Forrest decided to get their son after noticing that he was struggling to hit typical developmental milestones as an infant. A series of tests found that Henry had mutation in his MECP2 gene — the mutation that is responsible for Rett Syndrome, a genetic neurological disorder that most frequently affects girls but can also in rare cases affect boys.

According to the Texas Children’s Hospital, Rett Syndrome can leave children with cognative defects, a loss of speech, and a variety of motor difficulties.

Mr Engel, who has worked at NBC News for nearly two decades and has served as chief foreign correspondent since 2008, frequently shared updates about Henry’s health and his family’s life on the network.

In May, he wrote on Twitter that his son’s struggle was further intensifying.

“For everyone following Henry’s story, unfortunately he’s taken a turn for the worse,” Mr Engel wrote. “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.”

From the tributes that poured in Thursday morning following his death, it was clear that Henry’s impact on the world went far beyond his immediate family.

“Henry was special in so many ways,” Dr Huda Zoghbi, Founding Director of the Duncan NRI, wrote in a statement. “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. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on our Rett research. We will continue to push as hard as possible to develop treatments. This is how we will honor his life.”