Robbie Twible: Rising above a debilitating disease

Spend five minutes with Robbie Twible, and we challenge you not to walk away with a smile. In a brief interaction, the 12-year-old is likely to recap the latest episode of “Ellen,” play you a Justin Timberlake track on his phone, and break into a song-and-dance number from his favorite Broadway play.

You’d never know that he’s in pain.

The eighth-grader at W.T. Clarke Middle School has recessive dystrophic epidermolysis bullosa, an extremely rare, life-threatening disease that makes the skin fragile and prone to blistering. 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.

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.

But it’s Robbie’s indomitable spirit and enthusiasm for life, and not his ungainly disease, that defines him. His vibrant personality has not only moved community members and classmates to rally around him and raise money on his behalf, but has also attracted the attention of major celebrities.

Last July, Robbie met Timberlake, his hero, when the singer invited him to attend one of his concerts in Manhattan. That same week, Robbie, a Broadway enthusiast, danced onstage at the August Wilson Theater with the cast of “Jersey Boys,” and met Jessie Mueller and Jarred Spector, the stars of “Beautiful: The Carole King Musical.” Weeks earlier, he had been invited to Citifield to meet New York Mets David Wright and Curtis Granderson.

His celebrity-packed year was capped on Dec. 14, when he spent time with Timberlake once again before a concert at Barclays Center in Brooklyn. “This past year has been life-changing for me,” Robbie said. “I’ve learned that there are so many great people in this world. Living with EB is really tough and painful, but the good people in my life help me get through each day.”