00:00 ETHAN: Nobody can call me a thing, I'm a human.
00:09 COMM: Ethan D'Amato has Neurofibromatosis
type one, which has caused tumours to grow on his face.
All his life he's had to cope with people staring and their often hurtful comments.
But now the courageous eleven-year-old is on a mission to change the way people view
the condition, handing out leaflets explaining why he looks the way he does.
00:34 JOSHUA: He can go up to strangers and he talks
and he can make friends very easily.
He has a very magnetic personality.
00:40 ETHAN: They begin to understand what it is
and share it with their family and friends.
00:56 COMM: Neurofibromatosis is caused by a chromosomal
defect that affects the nervous system, resulting is tumours growing along the nerves.
It's present from birth.
01:07 PETER: It can lead to things like curvature
of the spine, bone disorders, blood disorders, cancer.
Tumours in the brain, affecting cognition, mental ability.
Eyesight, because the eyes have a lot of nerve endings.
01:21 NAOMI: Finding out he had NF just caused so
many questions in my mind that were probably accented by the changes I saw in my parents.
They were definitely going through complex emotions.
01:33 COMM: There is a specialist hospital close
to Ethan's home in Dallas, that he often visits for check-ups.
01:40 ALEXIS: So far there's nothing that's been
exceptionally promising to stop the plexiforms from growing.
But there are trials going on currently that are looking specifically at why these tumours
grow and what drugs we can give to stop those from growing, because we don't currently have
any medication.
01:57 COMM: Ethan has been offered surgery to try
and remove the tumours, but so far has turned it down, fearing the potential for nerve damage
could result in him losing his ability to laugh and smile.
02:07 ETHAN: I want to leave it, and I want it to
be done when all the equipment is right.
I want like maybe a robotic surgeon to feel more safer and more steady, a person's hand
could be more shaky.
02:30 COMM: Apart from his condition Ethan is a
normal eleven-year-old who loves the violin and playing with Lego.
02:37 ETHAN: I want to become a Lego designer.
I want to design like, cars, trucks and houses.
02:46 COMM: However when he goes out in public he
often draws attention.
02:56 ETHAN: They look at me differently, they give
me frowns and stuff and one time a four-year-old kid called me a thing.
I'm a normal human being, just like them.
03:14 COMM: But he has come up with a unique way
of helping people understand his condition.
03:19 PETER: We developed this brochure and it kind
of tells a little bit about what Ethan has.
03:24 WOMAN: I think sometimes people are curious
and they just don't understand that it might come across as rude.
I think human nature is to explore what's different, we have a natural curiosity.
03:33 MAN: Well now I'm curious so I hope that doesn't
come across as rude.
03:37 DAVID: People tend to stare a lot, especially
for little kids.
He goes over there very nicely and talks to them and engages the child's parents and the
child and says oh I'm Ethan, I was born with Neurofibromatosis.
He handles it a lot better than other people would.
03:59 COMM: Despite facing so many challenges Ethan
is determined to keep raising awareness of his condition and to keep his smile.
04:07 ETHAN: A person is not a thing, people are
all people, I'm a human.
Yes and I get more scared because they don't' know the truth.
They need to ask the question before they do it.