Today reported that Henry’s Rett syndrome diagnosis came in 2017, when he was just 2 years old. During his time at Texas Children’s Hospital, he received care from Dr. Huda Zoghbi, who studied his genetic mutation.
In May, Richard announced that Henry’s condition had “taken a turn for the worse.”
“His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness,” the NBC News Chief Foreign Correspondent tweeted at the time. “He was in the hospital for 6 weeks, but is now home and getting love from brother Theo.”
The hospital noted Dr. Huda and her team are continuing to try and find treatments for Rett syndrome, noting “they already are making significant progress with Henry’s own cells.” And Henry will always hold a special place in their hearts.
“Henry was special in so many ways,” Dr. Huda said in a statement shared on the hospital’s page. “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.”
(E! and NBC News are both part of the NBCUniversal family).
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