He was born with such a severe facial cleft that doctors had to perform five surgeries to save his left eye and open his nostrils.
Now five years old, little Ethan Zweig knows that other children point and stare at him.
But to the amazement of his mother Annie, he has a remarkably mature response: he immediately goes over and introduces himself.
As Ethan prepares himself to start at a new school in Los Angeles, California, this fall, it is this confidence that gives Annie a small sense of calm.
Ethan Zweig (pictured with his mother Annie) was born with a severe facial cleft and is now preparing to start at school. Annie is nervous – but she says Ethan is confident and ready to go
Doctors had to perform five surgeries to save Ethan’s left eye and open his nostrils (pictured)
WHAT IS A FACIAL CLEFT?
A cleft is a gap in the soft tissue, bone, or both.
The most common type of cleft is on the lip or palate – connecting the upper lip and nose.
Some people have more severe facial clefts, like Ethan, involving the rest of the face.
A facial cleft may involve a split in the bones and skin or a misshapen facial feature.
Scientists are still working to understand the exact cause of a cleft.
Children are more likely to be born with it if they have a genetic history. Some studies have shown a link between toxins and folic acid with the birth defect.
Normally, surgeons operate early – within the first nine months of life – to reconstruct the area and ensure the child can breath or see properly.
If it is very severe more surgeries will be required in later life.
‘Ethan is aware that people do stare at him, and he knows why but he wants to handle these situations himself and doesn’t want to be helped by us,’ she explains.
‘Usually he goes up to children who stare and he introduces himself.
‘He has a toy with him or in my purse which he shows to the other children and engages with them.
‘This usually works well. Also, he introduces himself to adults because he wants them to know who he is.’
Ethan was born with the congenital disorder and has already endured surgeries to save his left eye, close his open palate and open his nasal passages.
He is legally blind in his right eye and will continue to have corrective surgery as he gets older.
A cleft is a gap in the soft tissue, bone, or both.
The most common type of cleft is on the lip or palate – connecting the upper lip and nose.
Some people have more severe facial clefts, like Ethan, involving the rest of the face.
A facial cleft may involve a split in the bones and skin or a misshapen facial feature.
Scientists are still working to understand the exact cause of a cleft.
Children are more likely to be born with it if they have a genetic history. Some studies have shown a link between toxins and folic acid with the birth defect.
Normally, surgeons operate early – within the first nine months of life – to reconstruct the area and ensure the child can breath or see properly.
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If it is very severe more surgeries will be required in later life.
Annie admits she is having a hard time letting Ethan go to school. But she is trying not to be too precious.
‘I’m nervous sending him to school. I worry because people stare at Ethan and children ask him what’s wrong with his eyes.
‘I don’t want Ethan to feel like he is different and left out.
‘At times I do feel hopeless, and I do cry. But I never let him see.’
This is Ethan (bottom left) with his family at Thanksgiving. He lives with his mother Annie (left) and grandparents Adrienne and Phil Zweig (pictured behind his aunt, uncle and cousins)
Annie and Ethan live with grandparents, Phil and Adrienne.
The family are raising money to help cover Ethan’s medical costs using a GoFundMe page.
His grandfather Phil, 64, said: ‘Ethan is a happy person and very smart, we are doing full immersion in a local school.
‘He knows how to handle himself, he’s avoid people and handles any situation so maturely.
‘I used to always stand next to him or block his view if someone was staring.
‘But he told me he knows people stare and he knows why. He told me not to stand in the way because he was going to talk to the and let them know who he is.
‘Now we always carry a toy with us so he can go over to the child.’
He added: ‘We went through so much, we have a special relationship, he treats me more like a big brother.’
Annie added: ‘I want Ethan to be happy and function in society: go to college, get a job and be independent.
Ethan is blind in one eye. He carries a toy with him (right) to make friends with other kids
‘I do not want Ethan’s personality to be altered by the challenges ahead.
‘It is so much more than just the cleft.
‘Ethan’s cleft since birth has made it harder to eat, and to this day he has an eating aversion.
‘Ethan will never be able to see like I do. I am very honest with Ethan about surgeries and future surgeries.
‘I told him about his last surgery ahead of time. He is very brave. He told me he was just a little scared, but asked for a new toy after the surgery.’
As well as additional surgeries, the family are raising money for Electronic Visual Enhancement System to improve his ability to see greater details – which cost $5000 – $15,000.
Annie added: ‘Ethan is the sweetest boy, and everyone he meets loves him.
‘He makes me so proud. He is a gift. I feel that Ethan has made me a better person.’