Get it TodayHenry’s Rett syndrome was first diagnosed in 2017 at the age of 2 years. He received treatment from Texas Children’s Hospital. Dr. Huda Zghbi, who studied his genetic mutation.

Richard declared that Henry had taken a “turn for the worse” in May.

His condition worsened, and he developed dystonia (uncontrolled shaking/ stiffness), the NBC News Chief International Correspondent. tweetedAt the time. “He spent 6 weeks in hospital, but is now at home receiving love and support from his brother. Theo.”

According to the hospital, Dr. Huda’s team is still trying to find Rett Syndrome treatments. They also noted that “they are already making significant progress using Henry’s cells.” Henry will forever be a part of their hearts.

In a post shared by Dr. Huda on the hospital’s Facebook page, Huda stated that Henry was “special in so many aspects”. From the moment I first met him, his loving smile and connection with my eyes stole my heart. He fought tirelessly against this horrible disease. The most remarkable thing about Henry’s impact on us all at Duncan NRI as well as on Rett research is his quiet fight against this terrible disease. This is why we will keep pushing to find treatments. We will do this to honor his memory.” 

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