On Thursday, NBC News chief foreign correspondent Richard Engel shared heartbreaking news on Twitter that his 6-year-old son, Henry, had passed away of a rare disease and announced that he would be making efforts to find a cure.
The only child of Engel and wife Mary Forrest passed away after being diagnosed with Rett syndrome following a variety of neurological issues.
“Our beloved son Henry passed away,” Engel wrote on Twitter. “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.”
Engel’s post included a link to the Texas Children’s Hospital’s Jan and Dan Duncan Neurological Research Institute. The site had been updated to include a message about the battle his son faced and was raising funds to help find a cure for the future.
“Henry Engel was born on September 29, 2015,” the heartfelt message began. “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,” it continued. “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.”
The statement then quoted Zoghbi, the founding director of the Duncan NRI, who had worked closely with the family in their efforts to cure their son.
“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,” Zoghbi wrote.
“Henry made the best of every single day and worked tirelessly in his many physical and developmental therapies,” the message continued. “He continues to be an inspiration for Dr. Zoghbi and her team as they work to find effective treatments for Rett syndrome, and they already are making significant progress with Henry’s own cells.”
The message concluded by telling readers Henry’s family requested that “any who wish to honor [Henry’s] memory kindly direct contributions to support our continued research efforts.” The donation link can be found here.
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