Eddy Newton’s Story

Eddy was born with Neurofibromatosis, commonly known as Elephant Man’s disease. He inherited the condition from his mother, who has a less severe case of the disease.

Eddy’s doctors said he wouldn’t live to celebrate his eighth birthday. He’s defied the odds and now is one of the oldest living sufferers of Neurofibromatosis. But it hasn’t been easy.

Eddy’s disease causes tumors to grow rampant throughout his skull. The tumors cause massive disfiguration and create pressure on his brain, which results in debilitating migraine headaches that can last for weeks. Eddy has endured scores of surgeries to remove the tumors and repair the carnage left behind, beginning when he was only three years old.

These surgeries have left Eddy with no right ear, few teeth, a sagging eye lid, and a severely disfigured face literally held in place with screws and wire. Unfortunately, many more surgeries lay ahead for Eddy. Indeed, later this month he will have major surgery to revise his jawline, repair his sagging chin, reduce facial and neck scarring, and enhance his breathing.

He will be required to have regular surgeries for the remainder of his life as the tumors continue to grow throughout his skull.