By Jennifer Stahl

Staff writer

PALM BAY - Last year, 12-year-old Holly Patterson donated $5,000 to medical research.

The reason? She wants to help others who suffer from a rare disorder she has fought since age 2.

Holly has syringomyelia, which according to the American Syringomyelia Alliance Project's Web site, is a chronic disorder involving the spinal cord that occurs when fluid enters the spinal cord and forms a cavity known as a syrinx.

Over time, the syrinx may damage the cord and nerve fibers.

Symptoms include headaches, chronic pain and loss of sensitivity.

"She lives with daily pain," said Holly's mother, Sara. "She sometimes goes to school in pain and she doesn't use her illness to try to get out of anything. She's definitely very skilled at hiding her challenges by doing more than the average child can do just to prove that she can."

Holly also suffers from Chiari malformation, which is the primary cause of approximately 70 percent of syringomyelia cases. The condition is named for Dr. Hans Chiari, the Austrian physician who initially described the disease. 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 suffers from two associative disorders called intracranial hypertension, 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.

It was the first of many. Holly has had 12 surgeries in her lifetime.

Holly's twin sister, Hope, also suffers from intracranial hypertension, but has not displayed symptoms of the other disorders Holly has. Both girls will undergo cranial expansion surgery this summer at the University of Wisconsin in an attempt to alleviate the buildup of spinal fluid.

In the meantime, the Stone Middle School student will continue her fundraising crusade.

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

Holly was inspired to begin her fundraising initiative after seeing a news clip featuring a pen pal who sold her paintings to raise money for syringomyelia research.

Holly told her mom she wanted to raise money as well, and the family began to formulate a plan. Holly would go to her classmates for help.

"I went to the school and asked the principal (Joseph Loffek) if I could do a fundraiser," she said.

The project 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. The project's success spurred Holly to continue to raise money, and when a family friend suggested a fundraising yard sale, she jumped at the chance.

Holly and her friends went door-to-door asking neighbors for donations, and when word got out, other Palm Bay residents began dropping off merchandise. Soon, the Patterson household was overflowing with goods.

"You should have seen our house before the garage sale," Holly said.

The yard sale raised $2,400.

She and her sister also began making beaded bracelets, which they sold along with raffle tickets at a fundraiser last July. By the end of the year, the combined receipts from Holly's fundraisers totaled $5,000, which she donated to the American Syringomyelia Alliance Project, a group whose mission is to improve the lives of people affected by syringomyelia, Chiari malformation and related disorders.

This year, Holly and her family will host another yard sale, raffle and bake sale at their Palm Bay home April 14-15.

Holly's classmates are participating again this year by collecting donations and raffle items and advertising the event.

Raffle items include a $50 bowling package to Brunswick Bowling, four movie passes courtesy of Premier Oaks 10 and several massage packages.

Holly said she has not set a fundraising goal this year, but she will continue to donate to medical research.

The fundraiser will take place at the Patterson home, 2101 Paoli Drive N.E., Palm Bay. For information, or to make a donation, contact the Pattersons by e-mail at sarap@cfl.rr.com.

Contact Jennifer Stahl at (321) 751-5966 or e-mail her at stahl@hometownnewsol.com.