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Why This Boy Chose Not to Have His Facial Tumors Surgically Removed

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Ethan D’Amato was born with a number of neurofibromas, or facial tumors, due to Neurofibromatosis type one (NF-1). However, when given the choice to have his tumors surgically removed, the 11-year-old said no, according to The Daily Mirror. Ethan was told that with the operation comes the risk of losing his ability to smile and laugh if nerves are damaged. For him, that was the deciding factor. “I just can’t take the risk of not being able to laugh or smile,” Ethan told the Mirror. “I think I will wait until there is a robotic surgeon who won’t make any mistakes. Humans can be a bit shaky and may hit a nerve so I will have to wait.”


NF-1 is a condition characterized by changes in skin pigmentation and the growth of tumors along nerves in the skin, brain and other parts of the body, according to the National Institutes of Health. This can put pressure on the nerves, which may causes pain and loss of function in the affected areas, according to the Neurofibromatosis Network.

It affects approximately one in 3,000 to 4,000 people worldwide, and while scientists have not yet figured out a way to prevent neurofibromas, surgery is generally recommended to remove them, according to the National Institute of Neurological Disorders and Stroke (NINDS).

If Ethan’s tumors become malignant, treatment options include surgery, radiation and chemotherapy, but until cancer or nerve functionality is detected, there are mixed opinions on whether patients should proceed with surgery. “There is no general agreement among doctors about when surgery should be performed or which surgical option is best,” according to NINDS.

Ethan is incredibly outgoing, but he says he gets upset when people stare and make unkind remarks. “They look at me different, they give me frowns,” Ethan he told the Mirror. “One time a 4-year-old kid called me a thing. I’m a normal human being, just like them.”

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Ethan and his family figured out a way to help the public understand more about the condition — and how to approach people with it. They created a brochure to pass out to curious strangers.

“We thought this would be a quick and easy way to show people that Ethan is no different from them,” Ethan’s father Peter D’Amato told the Mirror. “He goes over there very nicely, engages them and says ‘I’m Ethan I was born with neurofibromatosis, and it’s just a condition, I’m not weird, I’m a perfectly normal child just like you.’”

Ethan’s family also posted a video on their YouTube page in April 2015 to raise awareness for the condition, where they all explain how NF has changed their perspective on the world. Ethan’s parents and siblings all weigh in, but it’s Ethan’s statement at the end that’s the most powerful. He looks right at the camera and simply says, “Living with NF helps me appreciate life.”


Originally published: October 30, 2015
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