Cleft Advocate gets recognition

Tuesday, Nov. 29, 2005 | 8:57 a.m.

To make a donation or to receive more information about craniofacial abnormalities call Cleft Advocate at (702) 769-9264 or visit its Web site at cleftadvocate.org.

When Erin Scott was born in 1987 without the roof of her mouth or an upper lip, her mother, Debbie Oliver, was determined to shelter the child from the staring, teasing and other forms of cruelty that facially deformed children endure.

"I did not want her to be bullied or to have people ask me if she had been in a car accident and things like that," Debbie Oliver said. Looks aside, she added, such physical deformities are potentially life-threatening because they often restrict the child's ability to chew, swallow and breathe.

"I had Erin's first 20 years all planned out -- send her to private school and do everything else I could think of to protect her," Oliver, 45, said.

But prior to what would be Erin's first of two dozen surgeries over 18 years -- operations that would cost more than $100,000 -- Oliver, a mother of six, decided that giving her daughter a sense of normalcy was far more productive than hiding her away.

After years of assisting parents of facially deformed children, Oliver in 2002 founded Cleft Advocate Inc., which now is affiliated with the AboutFace USA nonprofit group. Cleft Advocate rapidly grew from a mom-and-pop Internet operation to a leading international voice on craniofacial abnormalities.

Oliver's hard work has paid off. She and her organization have been selected to receive a $20,000 Voices Grant from Charming Shoppes Inc., a company that includes the Lane Bryant and Catherines Plus Sizes stores.

She received the grant on the nationally syndicated "Montel Williams Show." The program is scheduled to air at 10 a.m. Thursday on KVBC Channel 3.

"I never dreamed that putting up a Web site (cleftadvocate.org) with the intention to help a few other Nevadans would become as big as it has," Oliver said. "We now get 26,000 hits a month."

Operating out of her northwest Las Vegas home on a shoestring budget, Oliver has helped thousands with emotional support and education and by providing families with baby bottles designed for deformed mouths.

She also has helped parents navigate through mounds of insurance company red tape. (A single 2001 operation for Erin, Oliver noted, required her to fill out 6 pounds of paperwork.)

"Insurance companies sometimes do not cover cleft surgeries because they are seen as being cosmetic, while in fact the surgeries are necessary for children to function normally and even survive," Oliver said.

About a dozen states have laws that force insurance companies to cover clefts and other such abnormalities. Nevada, though, is not one of them, Oliver said, noting that she is concentrating her efforts on changing federal laws.

She went to Washington two years ago to testify before Congress on a bill that would require insurance companies and HMOs to unconditionally cover surgeries needed to correct craniofacial problems. The bill, however, never made it to the floor for a vote.

Lawmakers will get another shot at the measure, though, because the issue recently was reintroduced.

Cleft palates occur in one of every 700 births, Cleft Advocate says.

"When Erin was 18 months old, her doctor called to my attention that she was not babbling as much as she should have been at that point in her development," Oliver said. "He asked how she relates that she is hungry, and I told him she pounds on the fridge and screams. He said that is unacceptable.

"That one word, unacceptable, got me moving. I got Erin into speech therapy. I no longer wanted to hide her away. That was unacceptable. I was determined that Erin was going to be treated like other kids -- that she would have normalcy."

Erin, who had her first surgery at age 10 weeks, endured the type of bullying in junior high school that her mother feared, but her outgoing nature that she says she inherited from Oliver, gave Erin the strength to cope with it.

"My mother definitely made the right decision," said Erin, a Cheyenne High graduate who works as a runner for Becker Enterprises and attends the Community College of Southern Nevada, where she is studying to be a pharmacist.

"Yes, I got teased and came home crying. And yes I knew I was different. But I didn't care, and I still don't care because I am happy with who I am. I never wanted anyone's sympathy. I don't need it."

The apparel company grant money represents half of what the Oliver family lives on in a single year.

Oliver's 38-year-old husband, Robert Oliver, Erin's stepfather, is a security company account executive. Debbie Oliver is a stay-at-home mom who takes no salary from her nonprofit organization.

She plans to use some of the grant money to help host the North American Craniofacial Family Conference next July in Las Vegas to further raise awareness of the nation's fourth most common birth defect.

"Ms. Oliver serves as an inspiration to women across the country, showing them one voice can make a difference," Dorrit Bern, chief executive officer of Charming Shoppes, said in a news release.

Erin agrees, saying her mother has instilled in her great confidence.

"I walk into a room with my head held up, not down -- it has worked for me," Erin said. "If I were to give advice to other kids (with cleft palates) it would be to feel good about yourself."

Ed Koch can be reached at 259-4090 or at koch@lasvegassun.com.