Mother pursues diagnosis for child

The family is hoping a specialist can accurately diagnose the child's condition.
By LAURE CIOFFI
VINDICATOR PENNSYLVANIA BUREAU
NEW CASTLE, Pa. -- When D'yanni Nixon was about 6 months old, her mother noticed she wasn't sitting up or crawling like other babies her age.
A pediatrician assured Nicole Nixon that her daughter was fine and some children progress slower than others. But a few weeks later, when the pupils of D'yanni's eyes started dancing around at a fast pace, she was rushed to Tod Children's Hospital.
It's there that Nicole Nixon's journey to find out what ails her daughter began. Nearly four years later, she's still searching for answers.
D'yanni, who will turn 5 on Jan. 9, is traveling to the Kennedy Krieger Institute in Baltimore this week to see a specialist who deals with the white matter of the brain. That matter contains nerve fibers, and many of those fibers are surrounded by a white substance called myelin, which acts as an insulator and increases the speed of transmission of all nerve signals.
Test results
The first MRI taken of D'yanni when she was an infant showed that the myelin sheath of her brain was not fully developed.
Her mother was referred to a genetic doctor who could not give the family an accurate diagnosis of D'yanni's condition after a year and a half, Nicole Nixon said.
"It was very frustrating," she said.
D'yanni was then taken to Children's Hospital in Pittsburgh, where neurologists termed her condition leukodystrophy. Leukodystrophy, however, only refers 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, Nicole Nixon said.
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.
At the time of D'yanni's birth, Nicole and her two older children, Dominique, now 14, and Dearian, 13, were living in Campbell, and later moved to Youngstown. But by 2003, D'yanni's care needs became greater, and Nicole Nixon decided to move back to New Castle to be closer to family who could help with D'yanni.
D'yanni now attends the Arthur McGill Intermediate School in New Castle, a school that caters to children with disabilities, three days a week, and attends daily classes at Headstart.
Improvements
Nixon credits those two, along with other special care she is receiving, with helping D'yanni speak and be more independent.
"She likes to watch the other kids. She likes to see what they do," her mother said.
After being around the other children, D'yanni has learned to say "please" and "thank you."
But more important to Nixon was hearing D'yanni say she loved her.
"They asked me what I wanted to hear. I said as much as I say `I love you' to her, I'd love to hear it back. I almost cried when I heard it the first time," Nixon said.
That was nearly a year ago and Nixon said her daughter can now put together up to three words at a time.
Strong upper body strength enables her to maneuver her wheelchair and allows her to scoot around on the floor at home when playing.
A mass of pink "Dora the Explorer" toys dot Nixon's living room as D'yanni makes her way from her Dora tent to her Dora sit-and-spin toy. A special brace helps keep her spin straight so she can balance.
"Every year she seems to be learning something. It shocks me," her mother said.
No diagnosis
Doctors at Children's Hospital in Pittsburgh are unable to tell Nixon more about her daughter's condition and have referred her to a Baltimore specialist.
Nixon said it took an entire year to schedule the appointment, which was to happen Oct. 18, but the family later learned that the Kennedy Krieger Institute did not accept the health insurance Nixon receives through work or the health insurance that D'yanni receives through the state because of her disability.
Nixon said the doctor's staff told her D'yanni would be considered a self-pay patient and they must have $650 for the first office visit. Any additional tests scheduled will have to come out of the family's pocket, too.
Rather than let that set her back, Nixon decided to start fund raising. She sold more than 200 pepperoni rolls to her co-workers at the AT & amp;T Relay Center in New Castle and held a dinner to raise money. Her co-workers also held raffles to raise money. Letters went out to local churches also seeking donations.
To date she's received about $2,900, a sum she expects will be used up quickly once the doctors start testing D'yanni.
But Nixon is adamant about continuing her search for answers to her daughter's condition and finding medical help.
"I hope they can tell me exactly what's wrong with her. If they send me to someone else, I'm taking her there. I'll do this as long they can tell me something about her condition," Nixon said.
cioffi@vindy.com