Henry Engel passed on August 9 after battling Rett syndrome for about 4 years.
NBC News chief foreign correspondent Richard Engel's son Henry would have turned 7 yesterday. The journalist shared a heartwarming post remembering his late son, along with his adorable photo. He tweeted, referring to the child as "Binks" the nickname he and his wife, Mary, gave him, "Henry would have turned 7 today. A big thank you to everyone who sent kind and thoughtful messages, and donated to support medical research to defeat Rett Syndrome. Happy Birthday Binks!"
Henry would have turned 7 today. A big thank you to everyone who sent kind and thoughtful messages, and donated to support medical research to defeat Rett Syndrome. Happy Birthday Binks (our nickname) @MaryKForrest to support research: https://t.co/M8LV8SpUeT pic.twitter.com/wRJNJTFthV— Richard Engel (@RichardEngel) September 29, 2022
Henry passed on August 9, after battling with Rett's syndrome, a rare neurological condition, for about 4 years, per TODAY. Richard shared the upsetting news over a tweet, describing the child's smile as "contagious". He 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."
Mayo Clinic describes Rett syndrome which results in the loss of motor abilities including walking and speech. The condition is progressive, meaning that it might lead to intellectual difficulties over time. Rett syndrome has no known causes, treatments, or cures. Days after Henry passed, Richard shared that researchers are making progress by using Henry's cells in research to help cure the syndrome. He appealed to people to donate to the research.
Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease. To support the research: https://t.co/M8LV8SHv6r pic.twitter.com/UNnDONMtR1— Richard Engel (@RichardEngel) August 18, 2022
When Henry didn't reach developmental milestones like walking or talking, the couple thought he was just a "late bloomer" and requested a genetic scan. However, doctors warned that Henry would have drastically reduced mental and physical capabilities. Around Henry's second birthday, Richard found out that Henry has Rett syndrome, a rare neurological condition. Richard and Mary describe the day they received the diagnosis as the worst day of their lives. "I called the doctor and he said, 'We found something. It’s very, very severe. It’s lifelong, not treatable,'" Engel recalled. "I was in a state of shock."
"It was something that I'd been waiting for for years." @richardengel shares the exciting story of his son, Henry, saying "dada" for the first time pic.twitter.com/2qbzMa76iB— TODAY (@TODAYshow) March 15, 2019
But, Richard and his wife were extremely hopeful, showering as much love on their child as possible. "None of this means we don’t enjoy our time with Henry," Engel wrote in a moving piece on TODAY Parents, published in 2018. "I can’t imagine a child who is showered with more love. We gather on our bed several times a day for what we call 'cuddle parties,' where we kiss him, rub him, praise him (he loves to hear his name and be praised) and curl his thick, gorgeous hair in our fingers."
Getting the holidays started. Happy holidays to all from our family. Merry Christmas. pic.twitter.com/arYQgl00Em— Richard Engel (@RichardEngel) December 2, 2021
In March 2019, Engel shared the news that Henry had said the word "Dada" – a success for the toddler who said it for the first time with clear intention. "He didn’t just say it once, but two or three times. There was an urgency and excitement to it. Having a special needs child makes you savor the patches of sunshine you cross on the hard, and often lonely, road toward a cure: the doctor’s visits that don’t go as badly as expected, a solid night’s sleep, or a Dada three and a half years in the making."
After three and a half years my son Henry finally called me Dada. It was wonderful- gave me hope. You can’t quit on special kids. When they give back the reward is so sweet. @TODAYshow https://t.co/bA9jrEmJws— Richard Engel (@RichardEngel) March 15, 2019
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