Richard Engelis feeling some bittersweet emotions as a new father of two.
“We have gained a lot of perspective since Henry has come along,” says Engel, 46, of his older child, who in 2017was diagnosed with Rett syndrome, a rare genetic neurological disorder that leads to severe physical and cognitive impairments and, as of now, has no cure.
“We know why there is this differential. And it’s going to be hard to watch Theo pass his older brother in terms of capabilities,” he tells PEOPLE. “That’s going to be very difficult for us to see. To see a 1-month-old very soon overcoming his almost-4-year-old brother … that’s going to be tough.”
Lauren Joy Fleishman
The author and journalistpreviously told PEOPLEthat Henry “is probably not going to walk, probably not going to speak, probably not going to have any mental capacity beyond the level of a 2-year-old” as a result of his condition.
Courtesy Richard Engel
TODAY
And while watching Theo mature differently than his big brother will be “a bitter pill to swallow” for the couple, “We know other special-needs families are in worse situations,” Engel says now, noting, “Henry has major issues, but he’s better off than some with this disorder.”
But still, “Even to listen to [Theo] cry” at four weeks old highlights a difference in the boys: “He cries with such intensity … that might be annoying for some parents, but for us it’s like, ‘There’sso much energy and strengththat wasn’t there with Henry.’ ”
“It’s been a very different experience for Mary and me. We realize how different it is now that we have Theo,” Engel says. “We knew things were wrong with Henry at the very beginning. We didn’t knowwhatwas wrong for a long time. We didn’t find out the degree to which Henryhad a problem till he got his diagnosislater on. But we knew from the beginning things weren’t exactly right.”
Of Henry, he says, “We were hoping he would grow out of it. … Then we realized it was a genetic condition and he’s not going to get over it. Now holding Theo, it’s such a difference. It’s like we have never done this before.”
For more information on Rett Syndrome or to support the research being done with Henry, visitNRI.TexasChildrens.org.
On Assignment with Richard Engelairs Sunday at 9 p.m. ET on MSNBC.
source: people.com
