Every day, Robbie Twible needs his bandages changed. The 12-year- old soon-to-be eighth-grader at W.T. Clarke Middle School has epidermolysis bullosa, a rare skin disease that causes severe blistering all over his body. The bandages protect him from further scarring, and removing them is a slow, painful process, said his mother, Kathy Twible (rhymes with bible). But there’s one thing that helps distract Robbie from the pain: listening to Justin Timberlake.
He dances, sings and escapes into the music while Kathy, his father, Robert, or his nurse work on his bandages.
And that’s what made the evening of July 10 a dream come true for Robbie, when he met Timberlake before a concert at the Hammerstein Ballroom in Manhattan.
It has been a whirlwind recent couple of months for Robbie. In May he was invited to Citi Field to meet Mets third baseman David Wright. On July 9, Robbie, a Broadway enthusiast, met Jessie Mueller and Jarrod Spector, the stars of “Beautiful: The Carole King Musical,” at the Stephen Sondheim Theatre, and on July 12 he danced onstage at the August Wilson Theater with the cast of “Jersey Boys” — red jacket and all. “I was the fifth Season,” Robbie joked.
Sandwiched in between was the meet-and-greet with Timberlake.
Approximately one of every 50,000 children is born with some form of E.B., according to the Jackson Gabriel Silver Foundation, which aims to find a cure for the disease. It cites studies showing that 50 percent of children with severe E.B. are in constant pain. The life-threatening disease is caused by a shortage of a critical protein that binds layers of skin together.
Children who have the disease are often called “Butterfly children,” because their skin is as fragile as a butterfly’s wings.
But that hasn’t stopped Robbie. “To know that your child’s dreams can possibly come true,” said Kathy, “and all of the things [doctors] told me he’d never do — there’s a laundry list of things that he has done. And that is, to me, awesome.”
‘The worst disease you’ve never heard of’
Robbie was born at the North Shore Long Island Jewish Center on May 16, 2002, and doctors initially feared the worst, informing his parents that he might not survive. “They had no idea what it was when he was born,” said Kathy.