Ethan Zweig, five, was born with the congenital disorder and has already endured five 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.
But the five-year-old, who returned to school in Los Angeles, USA, on Monday 29 August, carries a toy around with him to approach other children who might be curious about his unusual appearance.
“He has a toy with him or in my purse which he shows to the other children and engages with them,” mum Annie Zweig said.
“This usually works well. Also, he introduces himself to adults because he wants them to know who he is.”
Zweig admitted she does get nervous about her son going back to school.
“I worry because people stare at Ethan and children ask him what’s wrong with his eyes,” she said. “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.
“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.”
Zweig and Ethan live with Ethan’s grandparents, Phil and Adrienne. The family are raising money on GoFundMe to help cover Ethan’s medical costs.
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 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 them and let them know who he is.
“Now we always carry a toy with us so he can go over to the child.”
Ethan’s mum added: “I want Ethan to be happy and function in society: go to college, get a job and be independent.
“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 an ‘Electronic Visual Enhancement System’ to improve his ability to see greater details. It could cost up to £11,000.
Zweig 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.”
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