Shane DiGiovanna remembers the first speech he ever gave. He was talking into a microphone to a group of people that were jumping into Southport Harbor on New Year’s Day. They were jumping into Long Island Sound in the winter to raise money and awareness for a rare, horrible life- threatening skin condition called epidermolysis bullosa. He was all bundled up to ward off the cold and he had on a Batman belt. Shane was 9 years old and he had EB.
His first attempt at public speaking was an unqualified success. The adults all listened attentively to, and were inspired by, the Mill Hill student. He explained that the jumpers would have a few seconds of pain, but those with EB endure a lifetime of pain. The adults and a few brave teens promptly jumped into the freezing water. Money was raised and attention was paid by media outlets to this little-known disease.