Richard Engel has opened up about the feeling of watching his baby son reach each developmental milestone while knowing his older son, who has a rare neurological disorder, may never reach some of them.
The couple have an older son, Henry, 3, who has a variation of Rett syndrome, a rare genetic neurological disorder in which children appear to develop normally at first but then show symptoms during their first year of losing motor and cognitive skills.
"It’s been a very different experience for Mary and me,'' Engel said. "We realize how different it is now that we have Theo.
"We knew things were wrong with Henry at the very beginning. We didn’t know what was wrong for a long time. We didn’t find out the degree to which Henry had a problem until he got his diagnosis later on. But we knew from the beginning things weren’t exactly right."
With Theo, Engel and Forrest have been heartened by each loud cry or feisty movement. At the same time, it's difficult to know that their baby son will reach certain milestones sooner than Henry, who turns 4 this month.
As Henry approached his second birthday, he couldn’t talk or clap his hands. He also couldn't walk or even sit up straight.
"We have gained a lot of perspective since Henry has come along,'' Engel said. "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.
"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."
The couple opened up about their family's journey and the important research being done on Rett syndrome on TODAY in January. Just the first few weeks of Theo's life have shown how much things will be different for him and his big brother.
"I would think there are certain things he is already doing that Henry doesn’t do — the amount of power in his limbs and the control he has with his muscles, even at this tiny age," Engel said. "It’s clear they’re different. So we are bracing ourselves for the day when this 1-month-old baby is going to do more than our 4-year-old."
The first few weeks with Theo have already been a different experience than with Henry for the couple.
"You hold a baby like Theo and he’s wriggling,'' Engel said. "His muscles are moving. When he is upset, he screams with his whole body and kicks his legs with power. It’s something we never saw with Henry.
"We were hoping (Henry) 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."