By Dan Howlett @DanHowlett85
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Videographer / Director: Jason Janik
Producer: Nick Johnson, Dan Howlett
Editor: Kyle Waters
Ethan D’Amato suffers from Neurofibromatosis type one – or NF-1 - meaning he was born with severe facial tumours.
The courageous 11-year-old has been offered surgery to remove his tumours but was told that could potentially damage his nerves – meaning he could have lost the ability to laugh and smile.
Ethan, who lives in Dallas, Texas, turned down the offer and decided a life with tumours is better than a life without smiling.
“I just can’t take the risk of not being able to laugh or smile,” added Ethan.
“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.”
In an attempt to help people understand his condition Ethan and his family designed leaflets that they hand out to people who are curious about his appearance.
Ethan’s father Peter, 57, said: “We developed the brochure because we needed to figure out a way to engage people.
“Sometimes if we’re in the supermarket we will have two or maybe three minutes to explain to them why Ethan looks the way he does.
“That’s not always possible – particularly with children - so we thought this would be a quick and easy way to show people that Ethan is no different from them.
“He’s just a normal little boy with the same hopes and fears as anyone – he just looks a little different.
“I call him a head turner.”
Despite seemingly taking the condition in his stride Ethan can get hurt by the stares and glances.
He said: “I get a lot of people staring at me and just looking at my face.
“That can get really annoying – I wish they wouldn’t do it.
“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.”
Peter added: “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.
“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.”
NF-1 is caused when there is a mutation of a gene on chromosome 17 leading to tumours forming along the nervous system.
It can be genetic but Peter and Ethan’s mum Siew, 53, have not been able to find any trace of it in their family.
His sister Naomi D’Amato, 20 set up a website and GoFundMe page to help raise awareness of the condition.
She said: “Finding out he had NF caused so many questions – we were all certainly going through complex emotions when he was born.
“I’d never seen my dad cry so that was difficult to deal with.
“It can lead to things like curvature of the spine, bone and blood disorders, cancer tumours and problems with mental ability and eye sight.
“But we are just thankful that he is here and will keep trying to get him all the help we can.”
Along with trying to change people’s opinions of NF-1 Ethan is also learning to play the violin and like most 11-year-old boys loves Lego.
“I’ve been playing the violin for five years - I’m learning Bach and Gavotte in D Major,
“When I’m older I want to become a Lego designer.
“I want to make Lego cities, cars, trucks and houses for a living.”
For more information, please visit https://www.facebook.com/ethan.damato.neurofibromatosis