The Tragic Death Of Richard Engel's Son

Richard Engel received devastating news no parent should ever have to experience. According to NBC News, his son Henry Engel was first brought to the hospital as an infant after the journalist and his wife noticed several developmental delays. After several medical and genetic tests, doctors concluded that Henry had a mutation in his MECP2 gene which unfortunately causes Rett syndrome. Rett syndrome is "a rare genetic neurological and developmental disorder that affects the way the brain develops," per Mayo Clinic

The disorder affects a person's mobility and ability to speak. "It's not just delay. It means life long, permanent, untreatable physical and intellectual impairment," the NBC News chief foreign correspondent said during an interview with Today. "Unfortunately, the more we learned about it, the worse the news got." However, Henry did make several improvements after his diagnosis, which included him saying "Dada" for the first time. "To parents with typically developing children, a little Dada may not seem like a big deal," Richard wrote in an essay (via Us Weekly). "For me it was a validation, an acknowledgement that he's in there, knows me, knows that his mother and I are forces for good in his life, and above all, that he loves us."

Although Richard and his family were trying their best to remain positive, Henry's condition took a tragic turn for the worse. 

Henry Engel died at the age of 6

Richard Engel announced on social media that his 6-year-old son Henry Engel has died after an aggressive battle with Rett syndrome, a rare brain disorder. "He had the softest blue eyes, an easy smile and a contagious giggle," NBC news correspondent wrote on Twitter. Dr. Huda Zoghbi worked closely with Henry and also shared some of his fondest memories with him. "His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him," she wrote in a statement. "We will continue to push as hard as possible to develop treatments. This is how we will honor his life." 

Just two months prior to Henry's passing, the Richard revealed his son's condition was quickly getting worse. "His condition progressed and he's developed dystonia: uncontrolled shaking/ stiffness," Richard tweeted. As a result, Henry needed additional care and had to be hospitalized for six weeks.

Richard also announced on Twitter that researches are working to find a cure for Rett syndrome and are using Henry's cells in the process.