At home, he soaks in the family’s saltwater pool, which is beneficial for his skin, as often as possible. He also exclusively wears long-sleeved shirts and pants.

Allison, a student at McVey Elementary School, said she enjoyed meeting Timberlake, but when asked what celebrity she would most like to meet, she responded, “My brother.”

The Twibles know only a handful of other families in the tristate area who have children with E.B, and they serve as a support group of sorts, gathering each December for a holiday party. For the past five years, the Veterans of Foreign Wars in Albertson has paid for the get-together, lending its lodge on Searingtown Road as the meeting place.

In November, Kathy will run the New York City Marathon for the second straight year to raise awareness of and money for the Jackson Gabriel Silver Foundation. She runs with a photo of Robbie on the front and back of her shirt. “It’s hard, physically and emotionally,” she said of the race. But she recalled last year’s marathon, when spectators, seeing her shirt, asked her about Robbie.

Hearing her son’s name, she said, is all the motivation she needs. “This is why I’m doing this,” she said.

To donate to Kathy's NYC Marathon fundraising page, click here.