Twelve years later, he’s going strong, despite the disease. When you meet him, and see his sense of humor and his outgoing personality, you would never know that anything is wrong.

The Twibles’ answering machine message is a recording of Robbie singing his own rendition — goofily off-key — of “Sherry” by the Four Seasons. “No one ever leaves a message,” his father said with a laugh.

But Robert described the symptoms of what Robbie lives with every day. “He falls, skin’s coming off,” Robert said. “And it’s not just a little abrasion. It’s almost like a third-degree burn.”

He added, “It’s the worst disease you’ve never heard of.”

Among the scariest symptoms of E.B. is blistering in Robbie’s throat and esophagus. When that happens, his family must take him to Cincinnati’s Children’s Hospital, the only hospital near the East Coast with an E.B. center.

Those weeks, said Robert, are the worst that come with Robbie’s disease. “For us, as great as this week has been,” he said, reflecting on his son’s visits with celebrities, “living with E.B. is a roller coaster, where you have your highs and lows.”

It’s the low days, the days when Robbie jokes, sings and dances his way through the pain, his father said, when he is nothing less than an inspiration. “It’s not just this week,” said Robert, the assistant athletic director at Queens College. “You see his personality. He’s what gets us through a lot of hard times.”

Meeting Justin Timberlake

Robbie’s star-studded adventures began when the husband of one of Robert’s co-workers, an editor of the Queens Tribune (which also featured Robbie in a story), arranged for him to go to Citi Field in late May and meet Mets players.

The Daily News covered the story, and Robbie told reporter Melissa Chan that one of his idols was Timberlake.

The article found its way to Timberlake’s publicist, who shared it with the pop singer, Kathy said, adding that she was told that Timberlake immediately told his publicist, “Call his mother.”