Texas boy born with rare condition opts not to undergo life-changing surgery

Ethan D’Amato was born with a rare genetic condition that causes tumors to grow randomly across his body, but the 12-year-old doesn’t plan to undergo surgery to remove the growths from his face. If he did, he said, he would fear losing two of the things he enjoys most.

“I just can’t take the risk of not being able to laugh or smile,” Ethan, who lives in Dallas, Tex., told Metro. “I think I will wait until there is a robotic surgeon who won’t make any mistakes.”

Ethan was born with neurofibromatosis, a condition that causes tumors to grow in the nervous system. According to the National Institutes of Health (NIH), there are three different types of the condition, but Ethan was born with type one, or NF-1, the most common type of neurofibromatosis, which affects 1 in 3,000 to 4,000 individuals in the United States. The type of tumor that develops depends on the type of supporting cells involved, according to the NIH. Scientists don’t know why the spontaneous genetic mutation occurs.

Neurofibromatosis puts Ethan at a greater risk of blood and bone disorders, as well as certain types of cancer, abnormalities in his spine curvature, and cognitive and eyesight issues.

Metro.co.uk reported that Ethan’s peers taunt him for the tumors that cover the right side of his face, and, while he describes the teasing as “annoying,” his parents say it doesn’t affect their son’s confidence.

“I have looked in his eyes when someone has said something not very nice to him, and he handles it a lot better than other people would,” Ethan’s father, Peter, 57, told metro.co.uk. “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.’”

Peter’s parents reportedly hand out homemade fliers to the community to help educate them about neurofibromatosis.

Ethan has high hopes for his future. He enjoys playing the violin, and when he grows up, he wants to become a Lego designer.

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‘I want to make Lego cities, cars, trucks and houses for a living,’ he told metro.co.uk.