By Hector Flores
He is shy in front of people he doesn¹t know, loves to read ³Curious George² and has occasional tantrums, but what makes him special and unique is that he is a survivor.
Robbie, who lives with his parents, Robert Sr. and Kathy, on Belmont Avenue in East Meadow, was born with a rare genetic skin disorder called epidermolysis bullosa. The disease causes his skin to blister in reaction to the slightest friction. His parents must wrap his skin with bandages and watch him very closely.
³My husband and I are both carriers of the disease,² Kathy Twible explained. ³But Robbie¹s case is severe. Although one in 50,000 have some mild form of E.B., Robbie¹s severe case is one in a million.²
Kathy added that her son was diagnosed with the disorder at birth. ³He was born without any skin on his feet,² she said.
At first the Twibles were told by doctors that their son would not live. If he did survive, doctors said, the average life span for someone with Robbie¹s condition was five to 14 years. But the Twibles are not passively accepting the experts¹ predictions. They have formed a support group with other parents who have children with similar conditions. ³Right now we have about 11 families in the group, and one of them is from New Jersey,² Kathy said.
In addition to the blisters, Robbie also develops sores on his internal organs. ³He has thrown up blood in the past, and feeding was very difficult at an early age,² Kathy said. ³He would eat from the bottle and get a blister.²
She explained that the blisters must be popped and drained. ³Some are filled with liquid and blood,² she said. ³The most severe cases are the ones with blood because they go into the skin.²
If unchecked, the blisters can become infected and develop into skin cancer. ³We must walk behind him, because any fall can develop into a blister,² Kathy said. ³He can never be left alone.²
She added that having a son with special needs has made her mature quickly as a parent, and appreciate the everyday activities parents take for granted with their children. ³When I first took him out for a walk, he was only 4 months old and it was great,² Kathy said. ³It was something normal for him to do. ... With his condition, any normal activity is unbelievable.²
The Twibles say, however, that they would not have been able to raise their son without the help of other family members. Debbie Imperatore, Kathy¹s sister-in-law, said that it certainly takes a village to raise Robbie. ³We¹ve all had to take turns changing his bandages from head to toe,² Imperatore said. ³We¹ve even taken turns sleeping with him to make sure that he doesn¹t scratch himself in his sleep.²
Though Robbie does not grow fingernails, he is constantly scratching himself. ³As his skin heals, it itches,² Imperatore explained. ³And as he scratches he either pops a blister or develops a new one.²
Robbie¹s condition is so severe that he can¹t even brush his teeth. According to Kathy, his teeth have been capped and sealed, and when his adult teeth grow in, they will have to undergo the same procedure.
The disorder has also cost Robbie some of his functions of speech. ³His tongue does not work the same as ours,² Kathy said. ³And he has trouble speaking.²
Educating a special-needs child
In September, Robbie is scheduled to begin kindergarten in the East Meadow School District. He is currently enrolled in Marcus Avenue School, where he is given speech therapy. ³East Meadow has the best special-needs program,² Kathy said. ³Robbie receives both physical and occupational therapy because he needs to learn to hold a pencil without developing blisters on his fingers.²
Leon Campo, the school district¹s deputy superintendent, said that the special-needs program is designed to help every child who needs it, and Robbie is no exception.
Ultimately, what the Twibles want is for their son to be accepted by the other children in their community. ³He¹s just a kid with a skin problem,² Kathy said. ³Everyone stares at him, and he¹s aware that he¹s different, and that¹s why we need to educate our neighbors and tell them that his condition is not contagious but genetic. I¹m sure there will be a time when he might develop psychological problems ‹ kids can be cruel at times ‹ but people just have to get to know him.²
Comments about this story? HFlores@liherald.com or (516) 569-4000 ext. 283.
