Ethan D’Amato suffers from Neurofibromatosis type one (NF-1) which caused him to be born with severe facial tumours.
It can also cause curvature of the spine, bone and blood disorders, cancer tumours and problems with mental ability and eyesight.
The 11-year-old turned down the chance to have surgery because he didn’t want to risk losing his ability to laugh or smile.
The 11-year-old from Dallas, Texas, has been offered surgery to remove the tumours, but this could damage his nerves, meaning he would lose the ability to laugh and smile.
It is a risk the courageous young boy, who aspires to be a Lego player, does not want to take.
“I just can’t take the risk of not being able to laugh or smile,” he told Barcroft TV.
“I think I will wait until there is a robotic surgeon who won’t make any mistakes.”
Ethan at Boston Children’s Hospital.
It was a difficult decision to make for the inspiring young boy, whose face often draws stares from strangers.
“That can get really annoying – I wish they wouldn’t do it,” he told Barcroft TV.
“They frown at me and once a child pointed at me and called me a thing. I’m not a thing – I’m a human being.”
However Ethan has used the attention he gets, as a chance to raise awareness about NF-1.
Ethan brings brochures about NF-1 with him when he goes to play violen in the park.
The 11-year-old and his family have designed brochures for him to hand out to people who are curious about his appearance.
“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,” said his father Peter.
He also noted that his son handled the attention exceptionally well.
Ethan celebrates his birthday with his parents Peter and Siew last month.
“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.”
NF-1 is caused when there is a mutation of a gene on chromosome 17 leading to tumours forming along the nervous system.
While the condition can be genetic, Peter and Ethan’s mum Siew, have not been able to find any trace of it in their family
Here are some other brave little battlers who won’t be defined by their disease, disability or condition.