Robbie Twible 'drafted' to Hofstra men's basketball team

Millions were introduced to Robbie Twible, 15, of East Meadow, when he danced with Justin Timberlake at one of the musician’s Manhattan concerts in 2014, and again when he warmed Ellen DeGeneres’s heart on an episode of “The Ellen Show” in February 2015.

What they saw was a child laughing, cracking jokes and sharing his positive outlook on life. What they didn’t see was the physical agony he has endured.

Robbie, a W.T. Clarke High School sophomore, 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.

“His organs blister, his eyes blister, there are days when he can’t move,” said his mother, Kathy.

She quickly added, however, that he has always been full of optimism and pride, which has enabled him to break through barriers and make friends across a wide spectrum of people, including the Hofstra University men’s basketball team, which “drafted” him as an honorary member on Jan. 24.

“We’ve got about 10 games to go, and we were looking for a little jolt,” head coach Joe Mihalich said at a news conference announcing the “draft,” adding, “Our prayers were answered when we met Robbie.”

Robbie’s addition was made possible by a nonprofit group called Team Inspire, Motivate, and Play Against Challenges Together, which connects children suffering from chronic illnesses with local college sports teams. The Twible family loves basketball and has attended many games at Hofstra, so Robbie knew he wanted to join the Pride when he reached out to Team IMPACT.

“I’m very excited,” he said, and the team shared his enthusiasm.

“He inspires us all. I’m so excited to bring him into our brotherhood,” said Eli Pemberton, a sophomore player. “He’s like us: He’s funny, sarcastic.”

“No, am I really?” Robbie said with a laugh.

“His personality blows you away,” Mihalich added. “I hope he can be around as much as possible. He’s part of our team now, and he’s part of our family.”

Robbie was given a bundle of Hofstra merchandise, including a hat, socks and a No. 4 team jersey. He cracked a smile at Desure Buie, the player who wears that number. While he was bantering with Buie and telling jokes with Pemberton and senior Rokas Gustys, his mother explained the specifics of his condition.

“For Robbie, life’s not easy,” she said. “EB is a progressive disease. It’s not going to let him play basketball, but being included is a big deal when you’re not like everybody else.”

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.

Robbie lives each day knowing that the foundation is closer to a cure, his mother said, adding that on the days his disease is at its worst, he still chooses to go to school.

While Robbie can’t play basketball, Pemberton said that his being there will be enough to help the team succeed. “On the basketball court, it’s easy to think of the negative,” Pemberton said. “But when we see Robbie, we see how strong somebody can be.”

To donate to EB research, click here.