Henry, the son of NBC News top foreign reporter Richard Engel, would have been seven on 29th September. The writer tweeted a touching tribute to his late kid, along with a lovely photo of him. He tweeted about the boy, referring to him as “Henry Binks,” the nickname he and his wife, Mary, gave him, would have been seven today. He thanked all who wrote warm and kind words and donated to help fund medical research to cure Rett Syndrome. Binks, happy birthday!
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 died on August 9 after suffering Rett’s syndrome, a rare neurological disorder, for roughly 4 years. Richard broke the heartbreaking news in a tweet, calling the child’s smile “contagious.” He penned a letter. Henry, his dear son, died. He had the most beautiful blue eyes, an easy grin, and a charming laugh. They constantly showered him with affection, which he responded to in abundance.
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— Richard Engel (@RichardEngel) August 18, 2022
The Mayo Clinic defines Rett syndrome as the loss of motor functions such as walking and talking. Because the illness is progressive, it may eventually cause cognitive issues. There are no known causes, treatments, or cures for Rett syndrome. Days after Henry died, Richard announced that doctors are making progress in their efforts to treat the disease by utilizing Henry’s cells in research. He asked everyone to contribute 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 failed to meet developmental stages such as walking and talking, the parents assumed he was a late starter and obtained a DNA screening. Doctors cautioned Henry, though, that he would have significantly decreased mental and physical capacities.
Richard discovered Henry has Rett syndrome, a rare neurological disorder, around Henry’s second birthday. The day Richard and Mary learned of their diagnosis was the worst day of their lives, according to them. When she contacted the doctor, he said, they discovered something. It’s quite harsh. It is permanent and incurable, Engel remembered. Engel was completely taken aback.
Richard and his wife, on the other hand, were overjoyed and lavished as much affection on their kid as they could. None of this meant they did not enjoy their time with Henry, Engel wrote in a poignant post published in 2018. He can’t think of a youngster who has received greater affection. They have ‘cuddle parties’ on their bed many times a day, when they kiss him, touch him, praise him (he loves hearing his name and being praised), and curl his thick, wonderful hair in their fingers.
In March 2019, Engel said that Henry had pronounced the word “Dada” for the first time with evident intention, a milestone for the child. He said it not once, but twice or three times. It had a sense of urgency and energy about it. Having a special needs kid helps one appreciate the rays of sunshine one comes across on the long, and sometimes lonely, path to recovery: doctor’s appointments that go better than expected, a good night’s sleep, or a Dada three and a half years in the making.