Boy and mom explain his malady to Oak View classmates

BLOOMFIELD, NJ — The nonprofit organization myFace presented two assemblies at Oak View Elementary School on Monday morning, Oct. 1. The first was for an audience of kindergarteners to second-graders and the later assembly was for the older students. The myFace organization addresses congenital defects of a child’s face and skull.

The goal of myFace, according to its website, is to provide medical care to children with craniofacial differences at the myFace Center, the Hansjörg Wyss Department of Plastic Surgery, NYU Langone Medical Center.

The Oak View assemblies addressed the emotional caring and understanding that a child with craniofacial differences needs from classmates. The assemblies also kicked off “Respect Week” for the school, with the theme of “choosing kindness.” Representatives from myFace came to Oak View because a third-grade boy, Kiran Fernando, 9, has a condition called Goldenhar syndrome. His mother, Dana Fernando, arranged for the presentations. This is Kiran’s second year at the school.

According to the U.S. Department of Health and Human Services, Goldenhar syndrome mainly affects the development of the eye, ear, and spine. Common signs are partially formed ears or the absence of them, underdeveloped facial muscle and bone, an unusually large and small mouth, abnormalities of the eyes, among other differences.

“Goldenhar syndrome is due to problems that occur when the fetus is forming within the womb of the mother, in structures known as the first and second branchial arch,” says the department website. “These structures will develop to form the neck and the head. The cause is still unknown.”
The myFace representatives at the assembly were Dina Zuckerberg, director of family programs, and Vera Eastman, community-service manager. Last year they visited 69 schools in NY, NJ, Conn, and Pa.

Zuckerberg told the assembly of third- to sixth-graders that she was born with a cleft lip, a hearing loss and a smaller left eye. She has had six operations.
“I remember being excluded and I remember those moments to this day when someone came over and said ‘Can I sit with you?’” she said.
Eastman said the people at myFace do not like the word “bully.”

“Children with craniofacial differences spend considerable time in the hospital and you never know what difficulties they are experiencing,” she said.
The students were told to engage with a child with craniofacial deformities as you would any other child. The students, seated on the floor of the gym, were asked who knew Kiran. Every hand shot up with an excited commotion.

Kiran’s mother, Dana, told the students that her son just grew a little differently than they did in their mother’s belly. She said Kiran has had 16 surgeries and will have more. Kiran, who was sitting to the side, joined his mother. She said he was born without an opening to his ears and wore a headband with hearing aids. The hearing aids, she said, will eventually be attached to his skull. Kiran removed the headband to show his schoolmates.

Dana said her son was blind in one eye and had a painted contact lens to keep the lid open. His right jaw was underdeveloped, she said, and will require surgery. He also cannot eat regularly and has a feeding tube attached to his stomach. Dana indicated where the tube attached underneath the boy’s shirt.
But, she said, he likes to play certain video games. Dana named several. From the response, every student knew the games and thought they were pretty great, too.

“It doesn’t matter what you look like on the outside,” she said.
Eastman asked for questions. One student wanted to know if a person could get a normal face again.
“It depends,” she responded. “But for most, it’s not about fixing anything, but improving your quality of life.”
Someone asked if Kiran could do sports.

“He can do all kinds of things,” Eastman said.
“Kiran said he has a brother,” someone asked. “Is his brother the same?”
Dana told the student his brother was not the same.
“It’s not genetic,” she said.

Someone asked Zuckerberg if she could ride a roller coaster. She said yes, and she has.
Can a person with a normal face end up like that? was a question.

Eastman said an accident or cancer could cause facial or cranial differences, but most are from birth.
After about an hour, it was time for classrooms again. Principal Mary DiTrani said to the assembly that the presentation was powerful.
“I learned a lot and I am glad Kiran was here to answer questions,” she said.

DiTrani reiterated the yearlong pledge of Oak View to her students.
“Sometimes we say things we don’t mean,” she said. “But if we just take a minute — choose kindness.”
Following the assembly, Dana said her son is part of the myFace group at NYU.
“He has had eight hospitalizations since 2015,” she said.

In NJ, Kiran does not have the immediate access to a craniofacial group as he does at NYU, she said, and he gets along a little better with that group.
She said her son was “a charismatic kid,” and from the way he carried himself in front of the audience or provided a response for them, to this reporter, it was true.

Before coming to Oak View, Dana said Kiran was at a school in Mountain Lakes for the hearing impaired.
“There, everyone has something,” she said. “He had more kids he could relate to.”

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