NBC news correspondent Richard Engel has shared that his 6-year-old son, Henry, has died. The boy was diagnosed with Rett Syndrome in 2018 — but the rare genetic condition doesn’t have a cure and is often fatal in males.
“Our beloved son Henry passed away,” Engel wrote on 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. Mary and Richard.”
Born in 2015 to Engel and his wife, Mary Forrest, Henry began to miss milestones as a baby. After extensive medical testing, medical professionals determined that he had a mutation in his MECP2 gene — and he was diagnosed with Rett syndrome at around 3 years old.
Rett syndrome affects the development of the brain and therefore affects muscle control, motor skills, intellectual development, and language. It is much rarer, and much more severe, in boys.
He was treated for his condition at the Jan and Dan Duncan Neurological Institute, where he captured the hearts of many there — including Dr. Huda Zoghbi, who shared a message on the website.
“Henry was special in so many ways. 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.”
Engel, who is the chief foreign correspondent at NBC, has shared his family’s struggles and triumphs regarding Henry over the past four years, talking openly about what it’s like to raise a kid with a disability and specifically what it’s like to have a child with such a rare condition.
“I can’t imagine a child who is showered with more love,” he wrote in one essay. “We gather on our bed several times a day for what we call “cuddle parties,” where we kiss him, rub him, praise him (he loves to hear his name and be praised) and curl his thick, gorgeous hair in our fingers.”
In another essay, he shared how amazing it was when his son, who had language delays, finally said “Dada.”
“To parents with typically developing children, a little Dada may not seem like a big deal. But for me it was a validation, an acknowledgment 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.”
It sounds like the love flowed deeply, in both directions. Sending condolences to everyone who loved Henry.
You may donate in Henry’s memory to support research related to Rett syndrome.