By Jennifer Stahl

Staff writer

PALM BAY - Most people cannot even pronounce the word "syringomyelia."

Twelve-year-old Holly Patterson is an expert on the subject.

The Stone Middle School student suffers from several rare disorders, including syringomyelia. According to the American Syringomyelia Alliance Project, this is a chronic disorder involving the spinal cord that occurs when cerebrospinal fluid enters the spinal cord and forms a cavity known as a syrinx.

Over time, the syrinx may destroy the center of the spinal cord, damaging the cord and nerve fibers. The patient suffers headaches, chronic pain and loss of sensitivity.

Holly also suffers from Chiari malformation, which is the primary cause of approximately 70 percent of syringomyelia cases. Chiari malformation is the downward displacement of the lower part of the brain into the cervical spinal canal. The condition causes debilitating headaches, involuntary eye motion, difficulty swallowing, vomiting and positional pain.

In addition, Holly also suffers from two associative disorders called intracranial hypertension, or a buildup of spinal fluid around the brain, and tethered spinal cord. In order to relieve the fluid buildup, Holly has had two shunts implanted, one in her head and one in her neck, which allow the fluid to drain to her abdomen. To correct the tethered spinal cord, Holly had surgery in an attempt to alleviate the condition.

Holly has had 12 surgeries in her lifetime. She was diagnosed with syringomyelia at age 2, and had her first surgery at age 4.

She also takes eight prescription medications - or 13 pills - a day to control her symptoms.

"She lives with daily pain," said her mother, Sara Patterson. "She had surgery last July and it's possible she might have to have another surgery at any time if the shunt fails. She lives with the constant threat of more surgeries hanging over her head."

Last year, Holly set a goal to have perfect attendance at school.

"She sometimes goes to school in pain," Mrs. Patterson said. "She doesn't use her illness to try to get out of anything. She's definitely very skilled at hiding her challenges. She does more than the average child can do just to prove that she can."

Despite persistent headaches and leg pain - Holly cannot stand or walk for long periods without pain - she achieved her attendance goal, and was awarded with a certificate at the end of the school year.

Holly has also started a crusade to raise money for medical research into a cure for the disorders, which are commonly interconnected. Holly's twin sister, Hope, also suffers from intracranial hypertension; however, she has not displayed symptoms of the other disorders Holly has.

"I want to find a cure to help people," Holly said.

A news clip featuring a pen pal who was selling her paintings to raise money for syringomyelia research inspired Holly.

She told her mom she wanted to raise money as well. They began to formulate a plan.

"I went to the school and asked the principal if I could do a fundraiser," Holly said.

The fundraiser was called Buy a Slice of Research with Coins for a Cure. The idea was to collect change from other sixth-grade classmates at Port Malabar Elementary. Holly and her friend, Morgan Walker, 12, made it into a competition between the classes. The class that raised the most money would be treated to a cake - courtesy of Holly's mom.

They raised $1,000.

"Morgan and I were counting the money and we had to miss our (sixth-grade) graduation practice because we had to count each class individually," Holly said.

The success of the first fundraiser spurred her initiative. Why stop at $1,000?

A friend of the family suggested she do a yard sale.

She and her friends went door-to-door asking neighbors for donations. When word got out, Palm Bay residents also dropped off merchandise. Soon, the Patterson household was brimming with donations.

"You should have seen our house before the garage sale," Holly said. "Word of mouth got out and the donations started pouring in."

The yard sale raised $2,400.

"We want to tell people how thankful we are," Mrs. Patterson said. "We met some wonderful people who were all very supportive."

Since her crusade began, Holly has raised more than $3,500, which she has donated to the American Syringomyelia Alliance Project, whose mission is to improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders.

"I think that's pretty incredible for a 12-year-old," Mrs. Patterson said.

Holly will have another fundraiser July 30 at the Wal-Mart Supercenter on Malabar Road. She and her friends, with mom in tow, will collect donations and sell raffle tickets. The raffle, which includes a grand prize of more than $300 in restaurant gift certificates, will be drawn July 30. Tickets are $1. The girls will also sell bracelets, which they made themselves, for $4.

For information, or to make a donation, visit Holly's Web site at www.helpholly.org.