September 23, 2024

Information reaching Kossyderrickent has it that Richard and Mary Engel has announced their son, Henry Engel, has died of RETT Syndrome. 




Taking to social media, Richard, made the announcement of his son passing away in the early hours of Thursday. 

Statement from Texas Children reads:

“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.”


Richard wrote: “Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease. 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.”


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