“Our beloved son Henry passed away. 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,” Engel wrote.
Our beloved son Henry passed away. 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. https://t.co/M8LV8SHv6r pic.twitter.com/21Ja6TOtjH
His parents realized in his infancy that Henry wasn’t meeting developmental milestones, according to the post. Genetic testing revealed a mutation in his MECP2 gene, which caused Rett syndrome.
The neurodevelopment disorder is seen almost exclusively in females and more rarely in males, according to the International Rett Syndrome Foundation. It causes cognitive deficits, loss of speech and difficulty with motor skills.
Dr. Huda Zoghbi, who first discovered the connection between the MECP2 gene and Rett syndrome, worked with Henry and studied his disease at TCH’s neurological research institute.
“Henry was special in so many ways,” Zoghbi wrote in a tribute to her young patient. “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 has been public about Henry’s health battl3e and the difficulties of parenting a child with special needs. He regularly posted updates about his son’s life to Twitter, and spoke about Henry with the TODAY show.
For everyone following Henry’s story, unfortunately he’s taken a turn for the worse. His condition progressed and he’s developed dystonia: uncontrolled shaking/ stiffness. He was in the hospital for 6 weeks, but is now home and getting love from brother Theo. pic.twitter.com/7atwNPhJ6q