Richard Engel‘s little man is making some serious strides.
The NBC News Chief Foreign Correspondent and his wife Mary Forrest appeared on Today to share an update about their 3-year-old son Henry Thomas‘ battle with Rett syndrome, a rare genetic neurological disorder that leads to severe physical and cognitive impairments and, as of now, has no cure. The little boy was diagnosed with the condition just over a year ago.
“He has been standing with assistance, with help,” said Forrest of Henry, who appeared on the show Wednesday alongside his parents as they spoke to Hoda Kotb and Craig Melvin in honor of Rett Syndrome Awareness Month.
Added Engel of taking Henry to places like parks and on play dates, “We have to keep going to places like that so he can socialize with other kids, but it is very hard.”
And while their son can’t walk or talk as a result of the condition (which primarily affects girls and that Henry has a unique variation of), Engel explained in a candid essay for Today that the couple uses a “special iPad linked to an eye-gaze censor” that keeps track of what Henry looks at, as Forrest explained, “to express what’s on his mind and what he needs and kind of open up his world a little bit more.”
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The couple said that Henry goes to therapy (both occupational and physical) almost daily. Said Dr. Huda Zoghbi of Houston’s Texas Children’s Hospital, where the little boy goes for most of his care, “He looks really good. He’s more interactive, using his hands much more.”
Zoghbi — who assisted in discovering the genetic mutation leading to the disorder and is the director of the hospital’s Duncan Neurological Research Institute — is working on curing mice in which she replicated Henry’s specific mutation, saying, “In this way we would be helping Henry but we would be helping many, many other people with Rett syndrome mutations” and vowing to “not retire until I bring a treatment, I hope, for Rett syndrome.”
Engel, 45, opened up in his personal essay about the family’s harrowing journey, recalling a specific recent instance where Forrest returned from a playground with Henry and broke down crying as she detailed the experience of hearing another mother discuss how she was “impressed” with her own daughter’s development.
” ‘I know it’s good for Henry to go to the playground. He likes seeing the other children. He needs to socialize, but the parents. I’m sitting there, dreading someone will come up to me,’ ” he wrote of what Forrest told him through tears. ” ‘I’m trying not to make eye contact, hoping they won’t ask me how old he is. What am I going to say, Yes, he’s 3 and, no, he doesn’t walk or talk? They’re not going to want to have a play date with Henry.’ “
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Furthermore, it’s getting “increasingly difficult” to help Henry keep active “because of basic physics,” as the parents have to move their son constantly to help keep him engaged in his surroundings — something that has led Forrest to start “working out like mad” to keep up with the physical demands of parenting.
“But Henry is making amazing progress,” Engel added in his essay. “He’s getting stronger. He’s sitting up straighter. He can focus for longer. He doesn’t talk, but he verbalizes more. In addition to regular physical-therapy sessions, we put Henry for an hour every day in a ‘standing frame,’ a device that holds him upright.”
“We’re not giving up by a long shot. We’re determined he will walk one day. But working out the complexities of Henry’s mind is an even greater challenge than training his body.”
After explaining other challenging adjustments he and Forrest have had to learn to implement via “trial and error” (for example, keeping Henry’s nails short due to his tendency to claw at his parents and helping the little boy feel less frustrated about communication), Engel clarified, “None of this means we don’t enjoy our time with Henry.”
“I can’t imagine a child who is showered with more love,” he wrote. “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.”
“People often ask me — and I appreciate it — how Henry is doing. I don’t have a quick answer, but there is hope in this story,” Engel noted. “There is even a chance Henry’s story could have a fairy-tale, after-school-special ending. Henry’s disability is profound, but is also profoundly unique, and anything that rare is valuable. Doctors think Henry’s exact genetic mutation is one of a kind. They think — and I’m still blown away by this — that he could hold the secret to finding a cure not only for himself, but for many other children with special needs.”
“I wish for this more than anything in the world,” Engel concluded his essay. “Maybe it is a fantasy, but Dr. Zoghbi thinks it’s not only possible, she’s cautiously optimistic it will work. So maybe this story — Henry’s story, our story — becomes the greatest news story I’ve ever told.”
For more information on Rett Syndrome or to support the research being done with Henry, please visit DuncanNRI.org.