In addition to meeting Wright, Robbie also shook hands with
Curtis Granderson (left).
BY LUIS GRONDA
Robbie Twible got to meet his favorite baseball player.
Robbie, a 12-year-old boy suffering from Epidermolysis Bullosa, achieved one of his dreams last week, walking on Citi Field and meeting New York Mets third baseman David Wright.
Epidermolysis Bullosa is a rare condition that causes the skin to have blisters all over the body, depending on its severity. The condition usually affects infants or young children and there is no cure for it. [Editor’s note: see sidebar]. Robbie’s parents said he usually has to wear long shirts and pants, especially during the summer months, to protect his skin from the sun.
Robbie, who attends W.T. Clarke Middle School in Long Island, was elated as he was led to the field to meet his favorite star player during batting practice before the May 22 game against the Los Angeles Dodgers.
Wright autographed batting gloves, baseballs, caps and one of his very own bats for Robbie and his family to take home.
Another one of Robbie’s dreams is to appear on “The Ellen DeGeneres Show.”
When asked what he likes about the talk show host, Robbie said, “She inspires me.”
While chatting with Wright on the field, he asked the slugger if he could help him get on her show.
“If I ever come across her, I’ll let her know,” Wright said.
Mets outfielder Curtis Granderson also paid Robbie a visit to take pictures and sign autographs. He told Robbie to give them that little extra boost they need to win that night’s game.
“You gotta get us a win today. No pressure,” Granderson said.
His parents, Robert and Kathy, were both thrilled with the experience of watching their son meet his favorite ball player.
“I’m so taken back, I really am,” Kathy said. “I never even imagined that he would get this close. I didn’t expect him to come over like that.That was amazing.”
Robbie has to go back to Cincinnati Children’s Hospital next month for another surgery related to the ailment, his mother said. It is the closest hospital to New York that can treat his condition, she said.
Wright eventually said goodbye to return to batting practice, but he had one final message for the 12-year-old.
“If we win tonight, I might have to have you out more often,” he said, which drew smiles and laughter from Robbie and his family.
The Mets won that night’s game, 5-3. Wright and Granderson both had a pair of hits in the victory.
Reach Luis Gronda at (718) 357-7400, Ext. 127, email@example.com, or @luisgronda.
What Is Epidermolysis Bullosa?
Epidermolysis Bullosa is an illness which causes fragile skin. The disease occurs from mutations in any one of 18 genes in the DNA code. The fragile skin causes blisters when a person experiences the slightest friction or trauma.
EB affects both genders and is not specific to any race or ethnic background. According to debra.org, about 200 children are born with EB each year. These children are known as “butterfly children” because their skin is as fragile as the wings of a butterfly. There are about 30,000 people in the U.S. who have EB, which is a hereditary disease. A doctor usually diagnoses EB by observing a sample of the skin under a microscope.
There are different levels of EB. Those with mild EB develop blisters that can be painful to live with, but the blisters do not deface the body. Severe forms of EB causes the internal organs of the body, such as the mouth, bladder and esophagus, to blister as well as the outer parts of the body. Severe forms of EB may also result in disfigurement, disability and the possibility of death before the age of 30.
The other manifestations of EB are anemia, cardiomyopathy, malnourishment, constipation, difficulty swallowing and osteoporosis. Although there is no cure for EB, research on EB has focused on ways to heal the blister wounds as well as ways to correct the genes related to EB.
- Esther Shittu