NBC information correspondent Richard Engel has shared that his 6-year-old son, Henry, has died. The boy was identified with Rett Syndrome in 2018 — however the uncommon genetic situation doesn’t have a treatment and is usually deadly in males.
“Our beloved son Henry passed away,” Engel wrote on Twitter. He had the softest blue eyes, a simple smile and a contagious giggle. We all the time surrounded him with love and he returned it, and a lot extra. Mary and Richard.”
Born in 2015 to Engel and his spouse, Mary Forrest, Henry started to overlook milestones as a baby. After in depth medical testing, medical professionals decided that he had a mutation in his MECP2 gene — and he was identified with Rett syndrome at round 3 years outdated.
Rett sydrome impacts the event of the mind and subsequently impacts muscle management, motor expertise, mental growth, and language. It is far more uncommon, and far more extreme, in boys.
He was handled for his situation on the Jan and Dan Duncan Neurological Institute, the place he captured the hearts of many there — together with Dr. Huda Zoghbi, who shared a message on the web site.
“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’s the chief international correspondent at NBC, has shared his family’s struggles and triumphs concerning Henry over the previous 4 years, speaking overtly about what it’s like to boost a child with a incapacity and particularly what it’s prefer to have a baby with such a uncommon situation.
“I can’t imagine a child who is showered with more love,” he wrote in a single essay. “We gather on our bed several times a day for what we call “cuddle parties,” the place we kiss him, rub him, reward him (he loves to listen to his identify and be praised) and curl his thick, attractive hair in our fingers.”
In one other essay, he shared how wonderful 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 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.”
It sounds just like the love flowed deeply, in each instructions. Sending condolences to everybody who liked Henry.
You could donate in Henry’s memory to assist analysis associated to Rett syndrome.