Grateful for Graham: A 4-year-old and his New Hartford family struggle with rare skin disorder

It’s known as “the worst disease you’ve never heard of,” and for 4-year-old Graham Robertello, it’s a painful way of life. Good thing he’s not tackling it alone. Robertello, of New Hartford, was born with Epidermolysis Bullosa (EB), a rare skin sensitivity disorder that can lead to tears, blisters and worse from even the most minor contact or friction. His parents, Carl and Amanda, have been with Graham every step of the way and have joined the fight to raise awareness and money for a possible cure. “Being rare, a lot of people don’t know about EB. At its core, it is a connective tissue disorder. It effects Graham’s skin, but it also affects him internally as well,” explained Amanda Robertello in a recent interview with the Daily Sentinel at their New Hartford home.

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