Mom still seeks answers for ill child

Doctors recommended tests be done in Pittsburgh.
By LAURE CIOFFI
VINDICATOR PENNSYLVANIA BUREAU
NEW CASTLE, Pa. -- D'yanni Nixon's trip to a specialist in Baltimore has produced more questions than answers.
D'yanni, 5, made a trip to the Kennedy Krieger Institute in Baltimore to learn more about her condition that has left her severely delayed and able to speak only a few words at a time.
Her mother, Nicole Nixon, was referred to the institute by doctors at Children's Hospital of Pittsburgh after they could not give Nixon an accurate diagnosis of what ails D'yanni.
Nixon said doctors wanted to perform seven tests but told her it would be easier to have them done in Pittsburgh where her health insurance is accepted. Her insurance is not accepted at the institute, and she has been raising funds to pay the costs of last week's visit. Before leaving she had about $3,000. The doctor's visit was $650.
Nixon said she intends to have the tests done locally and then return to Baltimore to consult with doctors about the results. She has been seeking answers to her daughter's condition since D'yanni was 6 months old. D'yanni was not sitting up and crawling like other children her age, but a pediatrician assured Nixon that her daughter was just progressing at a slower rate. A short time later Nixon noticed her daughter's eyes dancing around at a fast pace and she was taken to Tod Children's Hospital.
Myelin sheath not developed
An MRI taken of D'yanni when she was an infant showed that the myelin sheath of her brain was not fully developed. Myelin -- the white matter that surrounds the brain -- acts as an insulator and increases the speed of transmission of all nerve signals.
Pittsburgh neurologists termed her condition leukodystrophy. Leukodystrophy, however, refers only to a group of disorders that affect the central nervous system or the maintenance of the myelin sheath.
There are 34 individual conditions that come under the general heading of leukodystrophy, according to the United Leukodystrophy Foundation. But D'yanni falls under none of those categories, Nixon said.
Making progress
Children with the disorders that fall under leukodystrophy tend to lose their mental abilities and other functions, but D'yanni is progressing in her skills and learning new things, her mother said.
Nixon said five doctors, including one visiting from China, thoroughly examined her daughter. The doctors told Nixon that D'yanni will not walk. She now uses a wheelchair but can scoot along on the floor.
Nixon said she's not giving up hope that her daughter will one day walk.
"She's doing many things doctors told me she would never do," Nixon said.
An eye doctor also examined D'yanni and said there is medicine to help keep her eyes from dancing around and improve her vision, but they intend to wait until a complete diagnosis of her condition is made before administering it, Nixon said.
Nixon said she will continue to raise funds to enable her to visit the institute after the tests are completed in Pittsburgh.
"We are just at the beginning of many tests. I've got a lot to look forward to, and hope is all I can have," she said.
cioffi@vindy.com