For Eric

Oswego school community comes together to battle tot's rare skin disease

A year ago this week, when little Eric Schnable made his entrance into the world, his parents knew immediately the odds had caught up with them.

The baby had no skin on his feet, nor did he have any skin on the top of his thumb.

Eric was born with a rare genetic disorder, dystrophic epidermolysis bullosa, which results in extremely fragile skin that easily blisters.

The skin on his feet, he wore off while kicking inside the womb; the skin on his thumb was worn off from him sucking it before he was born. Both eventually grew back, but the year since his birth has been a time of challenge for both the baby and his parents, Dina and Kevin Schnable of Oswego.

Because his skin blisters so easily, Eric has to spend his days and nights tightly wrapped in a protective gauze to keep him from developing even more sores than he already has. The fact that he's crawling now, says Dina, a social worker at Oswego East High School, only makes the problem worse.

Each morning, the blisters must be popped and drained. Then Eric is wrapped up like a mummy for protection and to reduce the risk of infection -- a gut-wrenching ordeal for his parents that can take as long as 35 minutes.

Every other night he is bathed in vinegar and bleach to cut back on infection. And before he goes to bed, all new and existing blisters must be opened and drained again, before he is wrapped in gauze for the night.

It's a painful and stressful routine, "but we don't have any other choice," says Dina.

Dina Schnable says she could continue to work after Eric's birth because she found an amazing daycare provider who takes care of her son as if he were her own.

"I love her with all my heart," she says of Sue Liskunas. "If I didn't have someone like her, I probably wouldn't work."

Eric's dad, Kevin Schnable, who is the dean of students at Oswego High School and varsity basketball coach, also was born with the disease, which affects one child in every 50,000 births (daughter Kara, 4, is not affected). Kevin Schnable remembers getting wrapped up to play football in middle school. But when he hit adolescence, the disease seemed to go dormant, and the family is hoping the same thing will happen with Eric.

But those days are far away, and until then, the family must do whatever it can to keep him comfortable.

"We put a wrist band on his knees, but they get all bunched up and create more blisters," said Dina. "And we just never know when more will show up." Even rubbing his eyes when he had a cold can even create blisters on his eyes.

Big sister Kara is well aware of her baby brother's condition, most commonly referred to as EB, and talks about it as though it's completely normal.

"One day I looked down the hallway and saw Kara wrapping her doll in Eric's dressing," says Dina. "At first I was upset because I thought of how she was using his supplies, but then I realized how funny it was."

Despite what he's going through, Eric is a happy baby. As he becomes more active, more blisters will develop. But doctors say he needs to learn to live with the pain.

The Schnables point out that EB can be much more serious, even life-threatening. Because it's so rare -- there is a 50/50 chance the trait will be passed on -- there is little money that goes into research for it. That's why the Oswego High School BIONIC (Believe It Or Not I Care) organization, along with the school's Interact Rotary chapter, is having its fourth annual walk on Feb. 22, with all proceeds going to the dystrophic epidermolysis bullosa organization.

BIONIC is a student-run group whose mission is to identify and train student leaders. In the past, BIONIC has raised thousands of dollars for local causes, including an Oswego teacher seriously hurt in an automobile accident; and for cancer research, in response to an Oswego middle school student suffering from the disease.

BIONIC's sponsor, Oswego teacher Janice McCann, said when the group learned that Kevin Schnable's son was born with EB, they quickly decided to put the money raised at the annual walk toward research for this rare disorder.

"We know them both, and we know how rare and painful this disorder is," she said. "This is our way of showing our support."