Kenny Willis

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A Fairfield boy hopes for the ability to hear with his own ears

Wednesday, April 19, 2000

By MARIAN GAIL BROWN
MariAn.Brown@Thomnews.com

At first glance, Kenny Willis looks like a lot of other kindergartners his age. Playful. Inquisitive. Full of boundless energy. On closer examination, though, Kenny lacks somethingmost people have: ears.

Where the 6-year-old Fairfield boy's left ear should be, Kenny has a tiny flap of skin.

"This," Kenny proclaims, "is my baby ear." On the other side of his head, he has cartilage, the framework for an ear, but no opening or a canal to his eardrum.

Kenny's absence of ears is but one of many symptoms of Goldenhar's syndrome, (pronounced Goldenhair), a birth defect that gained attention in the early 1990s when an alarming number of Gulf War veterans' children were born deformed.

Being without ears means Kenny has had to adapt to a unique way of hearing. He relies on a device that vibrates his skull. The sound quality is similar to what you'd get in your bathtub if you sank down low with your ears under water. A little distant. Somewhat distorted. Filled with echoes.

When he can't make out what someone is saying with his bone conduction hearing apparatus, Kenny reads lips.

But while that's helpful, Kenny's parents, Lori Barringer and Timothy Willis Sr., are on a crusade to get their son plastic and reconstructive surgery to fashion ears for their little boy.

Once the surgeries are complete, if the surgeons are successful, Kenny will have real hearing in at least one ear.

Specialists say it could take between five and eight operations to accomplish and could cost as much as $125,000. Cigna, Kenny's insurance plan, vows to cover all of the surgeons' bills, and most of the hospital bills. The $250 co-pays for Kenny's hospitalization and post-operative follow-up care, along with thousands of dollars in travel expenses will be his family's responsibility.

When surgeons finish their work, they expect Kenny to feel better able to fit in with his classmates at Osborne Hill School in Fairfield.

But no matter how many operations he undergoes, Kenny will never be like most other kids. His missing ears are but one symptom of Goldenhar's.

It's a disease marked by asymmetrical faces, receding jaws, deformed palates, milky white cysts that can grow in the eyes and impair vision, organs that can develop misshapen and in the wrong places. Goldenhar's is a rare condition, most commonly linked with birth defects in Gulf War veterans' children.

While an estimated five in every 100,000 children are born with Goldenhar's, the rate in infants born to Gulf War veterans, however, is 20 per 100,000 - four times higher than the rate for civilians, according to the Association for Birth Defect Research for Children. The association supports a University of Texas research project studying Goldenhar's syndrome in 70 children.

Betty Mekdeci, founder of the association, believes, "there is some evidence" to suggest Goldenhar's syndrome is caused by exposure to certain toxic chemicals and pesticides.

Neither of Kenny's parents served in the military. And neither has ever been exposed to chemical warfare. When they conceived Kenny, they lived in an industrial part of Stamford, near a city dump. Kenny's mother wonders if the paints and chemicals she used in her home before she knew she was pregnant caused Kenny's birth defects.

"I always tell him how proud I am that he's my boy," says Willis, Kenny's dad. "I try not to dwell on how he's different from other kids. I try to concentrate on what he can do, rather than what he can't."

Years of physical therapy have helped Kenny improve his muscle tone and coordination to the point that he doesn't just belong to a T-ball team, he bats and he fields.

"I was pleasantly surprised to see how he connected with the ball," says Willis. "I don't know that I expected he could do that until I actually saw him swing and hit the ball."

At Osborne Hill School, Kenny's classmates appear to have easily embraced him.

On the first day of school, "Kenny's teacher spoke to the entire class about accepting him," his mom, Barringer, says. "I think what she said went a long way toward smoothing the way for him."

Kenny's teacher, Lynn Mahler, stood in front of the class with Kenny at her side and a special microphone wrapped around her neck that resembled a tiny Walkman cassette player.

"We explained the FM bone conducting hearing aid and the amplifier that I was wearing the day we got them," Mahler recalls. "We talked about how people are different and how they have different things to help them. The kids were very interested. They actually were fascinated by the hearing aid and the microphone piece."

The microphone Mahler wears allows Kenny the freedom to sit anywhere in the classroom and hear his teacher.

While Kenny appears to enjoy the company of his peers at school, Barringer worries what will happen next year and the year after as classmates and playmates get older and become more aware of Kenny's defects.

"Will they taunt him? Or tease him? Kids can be so cruel," Barringer says. "If there is anything that I can do to improve his life, I'm gonna do it. I know you can't stop every kid or every bully … There will always be someone who will want to tease him. What we have to do is give him the wherewithal to stand up for himself."

Watching Kenny roughhouse with one of his older brothers, Timothy Jr., 16, it looks as though he has mastered that lesson.

"His girlfriend loves me," Kenny says proudly. "She kisses me a lot, too," Kenny juts out his chin in a so-there expression. Then he adjusts the brown plastic headband that holds his hearing aid in place. The headband is important for another reason too. It holds Kenny's gold-framed glasses in place - a job that rightfully belongs to his ears.

"I know there are a lot of stuff that I have to do to get ready for my ears," he says as he fiddles with the headband that sits on top of his poker-straight bangs.

Moments later, Kenny is running around his house with impish glee and delight. He dashes from counting and sorting the change in his plastic piggy bank to grabbing the controls of a video game in his brother's room.

"Whoa! Whoa! Whoa! I got him," he says as he pounds the keyboard. "Yippee. Another one. Wow."

Then he turns and flashes a smile. "This is exactly what I want to be when I get older: Make one of these games for kids," Kenny says. "I wanna be famous. If you have that, people like you a lot. Then they want to play with you. Everybody I know likes me … so I must be famous, you know."

The Kenny Willis Fund has been established to help defray the boy's medical and travel expenses. Anyone wishing to make a contribution may send a donation to: the Kenny Willis Fund, account number 9425262920 at Fleet Bank, 2574 East Main St., Bridgeport, CT 06610.

MariAn Gail Brown, who covers regional issues, can be reached at 330-6288.