Eddy Newton greeted me at his front door with such an infectious cheerful attitude it felt as if we’d known each other for years. Here’s a man who has survived more than 80 surgeries in his life as he battles a rare form of Neurofibromatosis, commonly known as Elephant Man’s disease.
Despite being unable to hold down a job because of his appearance and continuous medical needs, Newton spends his time helping others. From volunteer work for hurricane relief in Texas, to helping kids at an orphanage in Mexico, to now running a ministry called Eddy Unmasked providing teens with support for low self-esteem and bullying.
Newton says he does it because teens today are much more able to relate to his struggles than some glitzy pop-star on a social media feed.
Newton’s friends have created a Go Fund Me campaign to help support his ministry and hopefully fix up his horrible living conditions.
Here’s a short video of our morning together which captures some of his charisma and inspiration.
Read more about his story from his Go Fund Me Campaign below:
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. Because of his medical condition and off-putting appearance, Eddy had an extremely difficult childhood and adolescence.
Other kids mocked and ridiculed him and adults stared and kept their distance. Even his own father abandoned the family when Eddy was only seven. Adulthood has not been any easier for Eddy. He has had difficulty securing and keeping regular work, and generally has been forced to rely on sporadic menial jobs and the generosity of friends. He even has been compelled to work in a traveling circus, starring as “The Man with Two Faces.” Eddy still has barely managed to survive. Eddy and his mother live in a mobile home that is in serious need of repairs. As the photos below show, the home is not suitable for human habitation. It has been severely damaged by fires and literally is falling apart inside.
Eddy does not discuss his home or permit anyone to visit him there. This undoubtedly is because he is ashamed and embarrassed by his appalling living conditions. Surprisingly, Eddy does not let his medical, financial, or living condition bring him down. He is always cheerful and outgoing. Eddy is the first to volunteer to help others and brings much joy and comfort to many. Although he seldom has a spare penny and barely manages the necessities, Eddy still finds time and money to help others. For example, Eddy volunteered almost four months in Texas helping survivors of Hurricane Katrina. He also has volunteered for over 15 years helping children in an orphanage in Tijuana Mexico. Eddy recently founded a non-profit ministry entitled “Eddy Unmasked,” which is devoted to helping children and teens cope with self-esteem issues.
Through that ministry, Eddy has shared his life story and inspiring message to scores of junior high and high school students throughout Southern California. Eddy hopes to expand his ministry and help even more young people in the future. This brings us to the purpose of this fund-raising effort: We need your help. We hope that you can contribute generously to help improve Eddy’s living conditions and provide funding necessary to expand his incredible ministry. You will not find anyone more deserving of your generosity. Thank you for your compassion and generosity!