DILLSBORO, Ind. — In the world of Meaghann Muncy, reality takes no respite.

        Seizures strike the 9-year-old in vicious waves. Four medications make her groggy and won't stop the problem.

        Her days grow long, fuzzy, disspiriting.

Sandra Muncy holds her daughter, Meaghann, 9. (Gary Landers photo) | ZOOM |

        But through the generosity of many people she has never met, her family's once elusive hope — paying for a radical, $150,000 brain operation at the Johns Hopkins Children's Center in Baltimore — grows more likely by the week.

        Meaghann has a rare congenital brain abnormality called hemimegalencephaly. Only about 10 children a year are born with it in the United States. Her only hope to stop the seizures is an operation to remove the right half of her malformed brain.

        “That's hard to take, but at this point it's a trade-off,” said Sandy Muncy, Meaghann's mother. “We won't know the extent of the operation until the doctors can get in there. About 95 percent of the kids who have this surgery do improve. There will be some weakness on her left side, and some paralysis, but we have that now.”

        Although surgery is risky, Mrs. Muncy said, Johns Hopkins is a good place to do it. Its neurosurgeons have performed 125 such operations since 1968.

        The Muncy family lives in this town of 1,200 people in western Dearborn County. Her mother, an advocate for special-needs children, and her father, Vernon Muncy, a plumber, have two other children.

        With the help of a special-education teacher, Meaghann attends Dillsboro Elementary School, but her condition limits her activities.

        Her unsettling reality is that life-threatening seizures can come at any moment and last for varying times. Sometimes she experiences 50 major ones in a day.

        “The smaller ones, I can't even count,” Mrs. Muncy said. “What makes some of the others so dangerous is that they won't stop. It's the uncertainty that hurts.”

MEAGHANN'S FUND

A “Bluegrass Benefit for Meaghann” will be held at the Whitewater Township Senior Center, 6125 Dry Fork Road, Cleves, from 5 to 11 p.m. May 3. Donation: $10.     Also on May 3, a benefit will be held 7:30 p.m. to 12:30 a.m. at Receptions Banquet Hall, 5975 Boymel Road, Fairfield. It will feature a silent auction, door prizes, raffles, a band and other activities.     Admission: $15.     Donations can be made directly to Meaghann's Fund, P.O. Box 298, Dillsboro, Ind., 47018. Telephone: (812) 432-3007.

        On a “good” day, Meaghann suffers only three or four big attacks. The seizures hinder her ability to learn and remember.

        She's drifting away.

        “Over the years, Meaghann has lost interest in most of the things she used to do,” Mrs. Muncy said. “She used to be more active and social. She was full of energy. Now, if we don't stimulate her, she'll sleep. We're back to square one.”

        The family's determination has touched the townspeople, said Virginia Huber, who lives on the same street and offers fliers for Meaghann's fund-raisers in her used book shop.

        “She's a great girl,” Mrs. Huber said. “This town is very giving. People want to help.”

        At school, “the kids are real accepting,” added Bill Lakes, her principal. “We try to keep her day as normal as we can. She goes to the cafeteria. We include her in as many of the activities as we can — even field trips.”

        Her school situation is complicated by her severe developmental delays. In many ways, she's like an infant. She started to walk only about a year ago. She can no longer talk, Mrs. Muncy said, but don't be deceived, she added. Her receptive capability is greater than her expressive.

        “She has worked so hard to get where she is,” Mrs. Muncy said. “She used to be more expressive, but we're losing that.”

        Mrs. Muncy said Johns Hopkins won't accept Meaghann's Indiana Medicaid insurance. The Muncys considered selling their house to pay for the surgery, but the sale wouldn't generate enough money. They thought of moving to Maryland because the hospital would accept Medicaid there.

        “But that would mean she would go back to the end of a long waiting list to receive medication, therapy, health aides — all expensive things,” Mrs. Muncy said. “So that wasn't an option.”

        Although the operation could be done in a Cincinnati hospital, she said, Meaghann's doctor has recommended Johns Hopkins because of the experience and skill of its surgeons in performing a hemispherectomy.

        “She won't get a second shot,” Mrs. Muncy said. “This is her brain we're talking about.”

        Like a miracle, the money has appeared quickly. From Indianapolis to Cincinnati, volunteers are helping pay for the operation with auctions. Rock singer Peter Frampton donated a gold album with a personal note attached to the back. Hoosier rocker John Mellencamp donated a signed guitar. Actor Drew Carey sent a T-shirt signed by the cast of his TV show.

        At a recent auction in Lawrenceburg, donated items generated $31,000. They included a baseball signed by both Babe Ruth and Lou Gehrig. It sold for $8,500.

        “People have given up a lot of personal stuff for our auctions,” Mrs. Muncy said. “It all helps.”

        Two fund-raising events will be held for her in May. Even the Internet (www.meaghannsfund.siteblast.com) is clicking with compassion.

        “We've raised $60,000 in less than three months and a little more than $100,000 total,” Mrs. Muncy said. “It has been amazing and we're grateful. It renews your faith in the human spirit.”

        In June, Meaghann is scheduled to enter Johns Hopkins for her initial consultation. Mrs. Muncy expects the operation to be performed by the end of the year.

        That's faith talking.

        Although the family still needs $50,000, the figure doesn't seem nearly as daunting as $150,000 did a few months ago.

        “We haven't spent our last 10 years on this kid just to cop out now,” Mrs. Muncy said. “If we have to sell everything we own, we will.”

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