Remembering and Honoring Henry
Henry Engel – a beautiful child and a true hero for fighting Rett syndrome and inspiring researchers to find a treatment – sadly passed away on August 9, 2022.
Henry Engel was born on September 29, 2015. When he was still an infant, his parents noticed that he was not reaching his developmental milestones, and he underwent numerous medical exams to discover the cause. A genetic test ultimately provided the answer: Henry had a mutation in his MECP2 gene. MECP2 mutations cause Rett syndrome, a disorder that typically affects girls after their first birthday, robbing them of learned skills and leaving them with cognitive deficits, loss of speech, and a variety of motor difficulties.
In 2018, Henry and his family came to Texas Children’s Hospital’s Duncan Neurological Research Institute (Duncan NRI). Since then, Henry’s mutation has been studied by Dr. Huda Zoghbi, who discovered that MECP2 mutations cause Rett syndrome.
“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.”
- Dr. Huda Zoghbi, Founding Director of the Duncan NRI
Henry made the best of every single day and worked tirelessly in his many physical and developmental therapies. He continues to be an inspiration for Dr. Zoghbi and her team as they work to find effective treatments for Rett syndrome. Recently, they characterized the novel MECP2 gene variant that Henry carried and determined how this variant impairs MeCP2 function to cause Rett syndrome. These findings have opened a new avenue to screen for therapeutics that can potentially help a broad group of Rett patients. For more information about this study, see this news release.
Henry’s family has requested that those who wish to honor his memory kindly direct contributions to support our continued research efforts.