Ethan D'Amato, 11, was born with this disease. Although he has tumors covering the entire right side of his face, Ethan is a normal kid (AKA Legos all day everyday).
Ethan and his family are constantly at the doctors for checkups, but they have been told that there is no foolproof solution t stop the tumors from growing on Ethan's face. There is the option of surgery but it is also very risky. Ethan is not willing to take the risk of losing his laugh or smile, a potential complication of the surgery, saying, "I want to leave it" until it is safer. What is admirable about Ethan is his glass half full approach to life. Most children are afraid of Ethan because of how he looks. One time, a 4-year-old called him "a thing," to which Ethan thought, "You have no right to call me a thing. I am a human."
Because of his experiences and interactions, Ethan is trying to educate people rather than be offended by them because of their lack of knowledge on the subject. Each time he leaves home, he brings pamphlets that he created on neurofibromatosis for anyone who may look strangely or ask questions about why he looks the way he does.
I don't think I could handle this well at any age, never mind 11! Here is Ethan's full story:
xoxo, Kaila
WOW! I cannot believe this kid is mature enough to make the decision to wait until he is older to have the surgery so that he doesn't lose his smile. So cute!!
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