Robbie goes on 'Ellen'

12-year-old Clarke Middle School student with skin disease meets his celebrity hero

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Not many people can say they’ve met all their celebrity heroes in a lifetime, let alone before they turn 13.

Robbie Twible can.

On Feb. 19, Robbie; his parents, Robert and Kathy; and his sister, Allison, were invited on stage at a taping of “The Ellen DeGeneres Show” to sit and chat with DeGeneres. It was a complete surprise for the family, who had been told by producers only that they would be in the audience for the taping.

It was an even bigger surprise when Ellen invited them back for a future taping, in December, of the show’s annual “12 Days of Giveaways” episodes, when she awards prizes to every member of the audience.

“I was star-struck,” said Robbie, an eighth-grader at W.T. Clarke Middle School. “I was like, I can’t believe this is happening.”

Robbie, who has recessive dystrophic epidermolysis bullosa — EB for short — an extremely rare disease that makes the skin fragile and prone to blistering, had long dreamed of meeting DeGeneres, whose show he watches every day.

To protect his skin, he wears extensive bandaging which must be changed daily. It’s an extremely painful process, Kathy said, but watching Ellen helps distract him.

One in 20,000 people is born with the disease, according to the EB Research Partnership, a nonprofit organization dedicated to funding research for and ultimately curing it. Those who have the disorder lack a critical protein that binds layers of skin together. Blisters occur all over the body, including the eyes, mouth, esophagus and internal organs. There is no known cure.

Meeting the talk show host, who is well known for her philanthropy, completed a dream list of celebrity meetings that Robbie began checking off last summer, when he met a variety of professional athletes and Broadway performers — and danced on stage at the August Wilson Theater with the cast of “Jersey Boys.”

He met another of his heroes, Justin Timberlake, twice — at a concert at the Hammerstein Ballroom in Manhattan on July 10, and again on Dec. 14, at a show at Barclays Center in Brooklyn. But in several interviews with the Herald, Robbie — the Herald’s 2014 Person of the Year — said he was still waiting to meet one more celebrity: DeGeneres.

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