She may have other distinguishing characteristics. If she uses her eyes to express her needs, she has probably lost her ability to speak. Perhaps she has also lost the ability to walk. Her spine may be curved, and her hands and feet twisted and rigid.

And she is almost always a girl, for 98% of the children afflicted with this heartbreakingly selective genetic disorder are female.

Brittany King lives with her parents and brother Charlie in the small rural community of Fork. For most of her first year, Brittany seemed like a normal child. The dark-eyed baby with raven curls had begun to feed herself, could speak a few words, and was about to take her first steps. "Then she started getting real quiet," recalled her mother, Fork native Debbie King. "She quit doing everything. She started regressing. We started taking her to different doctors, trying to find out what was going on."

"They flew, they drove… seems that's all they've ever done since they found out something was wrong with her," said Doris King, Brittany's grandmother.

Searching for answers, Debbie and Allen King took Brittany to over twenty doctors in South Carolina, North Carolina, Virginia, and Georgia. Finally, in 1997, the little girl was examined by a doctor who had trained under Dr. SakkuBai Naidu, a leading specialist in neurogenetic disorders at Johns Hopkins University in Baltimore, Maryland. Before leaving Columbia for her new practice in California, the doctor told the Kings that their daughter had Rett Syndrome in its most advanced stage.

First described by Dr. Andreas Rett in 1966, Rett Syndrome, commonly referred to as RS, received worldwide recognition in 1983 with the published research of Dr. Bengt Hagberg. Like Brittany, most children with RS seem to develop normally until they reach 6-18 months. Then they begin to lose communication skills and purposeful use of the hands. Odd hand movements may become apparent. Other aspects of the disorder include seizures, disorganized breathing patterns, and the most profoundly damaging symptom of all - apraxia, the inability of the mind to control movement of the body.

"We have about 2,800 reported cases in the US," said Elaine Gales, chief operating officer of the International Rett Syndrome Association near Washington, DC. Thousands more with the disorder may be undiagnosed or unreported, or misdiagnosed with autism or cerebral palsy. In October 1999, the gene for RS was isolated and identified. "Researches are working diligently on a treatment that might prevent it before it gets to its advanced stages," said Gales.

Since her daughter's diagnosis, Debbie King has prayed for a miracle, though a miracle often seems faraway for her little family. Her husband, a former line supervisor for Pee Dee Electric Cooperative, became disabled three years ago after an auto accident. She cares full-time for her mother, who has lung cancer. King herself has a recurring benign brain tumor, which affects her balance and lower back.

These days, King's prayers are increasingly fervent. Digestive problems are common in girls with the disorder; Brittany, who at age nine weighs only 38 lbs., cannot have bowel movements without the aid of stool softeners and enemas. In the past few weeks, Debbie King has come to believe that something may be significantly wrong with Brittany's digestive system; her eyes and rigid posture communicate constant pain. "She's had three grand mal seizures in the past three months," King adds.

With hope borne of desperation, the Kings have made an appointment for their daughter at the Kennedy Krieger Institute at Johns Hopkins, one of only four centers in the U.S. that specializes in the disorder. Brittany is scheduled to be seen on August 7th by Dr. Naidu and a team of specialists. She might receive any of a number of tests which could measure the disorder's path and progress through her tiny frame, and possibly identify the reason for her constant discomfort.

There are no guarantees. Though the Kings' income, at first glance, seems humble but adequate for a family of four, the monthly costs associated with Brittany's care are over $500. Debbie King will pay that much for a single office visit with Dr. Naidu. And Brittany's Medicaid insurance will not cover any of it.

The Kings don't have any idea how much the journey will cost. "We won't really know until the doctors see her and recommend the tests," says King. "But we pray that we can raise the money. We're waiting for a miracle."

GOSPEL BENEFIT

A Gospel Singing to benefit Brittany King will take place this July 29 at 6:30 PM at the Fork Baptist Church, off Hwy. 41 between Fork and Lake View. Featured guests include the Lumberton River Quartet, Soul Harvest, and Second Chance. A love offering for the King Family will be accepted. Call 464-7514 for more information.

Those unable to attend may send their donations to:

Fork Baptist Church
1372 Old River Rd.
Fork, SC 29543

Please make checks payable to Fork Baptist Church, with "BRITTANY KING" in the memo area. Contributions are tax-deductible.