NBC News Chief Foreign Correspondent Richard Engel on Thursday announced the death of his 6-year-old son from a rare disorder.
“Our beloved son Henry passed away,” Engel and his wife Mary wrote in a statement he posted to Twitter. “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.”
Henry Engel was suffering from Rett syndrome, a rare genetic neurological disorder that causes symptoms including loss of mobility, loss of speech, involuntary hand movements and seizures, among others. Rett syndrome, which affects about 1 in 10,000 females, is even rarer in males, notes the International Rett Syndrome Foundation.
Huda Zoghbi, who studied Henry Engel’s case at the Texas Children’s Hospital’s Duncan Neurological Research Institute (Duncan NRI), described him as “special in so many ways.”
Zoghbi added, “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.”
The institute noted it is already using Henry Engel’s cells to try and combat the disorder. The hospital has set up a memorial fund in his honor.