CRANBERRY TWP - When Sue and Steve Balog learned of their son's rare, fatal degenerative neurological disease, a feeling of helplessness set in. But at that moment they also knew they wanted to do something.

Zachary, now 8 years old, suffers from Batten disease. The disease, causes mental impairment, worsening seizures and the progressive loss of sight, and motor and communication skills in children.

Zachary is unable to walk or talk, and his parents aren't able to tell if he comprehends what they say to him.

There is no cure for the disease.

In Zachary's case, he was diagnosed with the late infantile form of the disease, which progresses rapidly and usually ends in death between 8 and 12 years of age.

But the Balogs, determined to do something, started Zach Attack, a fund-raising group to help find a cure for the rare disease. The family joined forces with Nathan's Battle Foundation, another nonprofit group working to find a cure.

The foundation was established in 1999 by Phil and Tricia Milto of Greenwood, Ind., after their son, Nathan, was diagnosed with the disease.

The joint venture has paid off.

After raising $200,000 through events over the last few years - all of which has gone to Nathan's Battle Foundation - Zachary has become the first child to receive the experimental gene replacement surgery for Batten disease.

Just recently approved by the U.S. Food and Drug Administration, the procedure lasted 9½ hours.

The family hopes that the June 1 surgery will stop, or at least slow, the progression of the disease.

During the surgery Zachary had six holes drilled in his skull and the gene infused through them. It's hoped that gene will replace the missing gene that causes this disease.

"It was a long, long day," Sue Balog said.

But, realizing there are few options, the family is excited to be involved with the groundbreaking research, despite the anxiety that goes with it.

Zachary's father, Steve, said the family had two options – to either accept the disease, or to work and find a cure for it.

The symptoms of the disease first started showing through seizures. Sue Balog said that, while playing in the back yard, Zachary would fall, but without any apparent cause.

But he didn't trip. He was suffering from seizures. Then came the loss of motor skills, as Zachary lost the ability to walk on his own.

At first, the doctors thought Zachary was suffering from a seizure disorder. But after some Internet research, the Balogs learned of Batten disease and requested that he be tested. The test showed that he had the disease.

It's estimated that the disease occurs in two to four births out of every 100,000 in the United States each year.

But because the disease only occurs when both parents carry the recessive form of the gene, when a family has one child with the disease, it's not uncommon for it to have multiple children with the disease.

The second of the Milto's three son's, P.J., shows symptoms of the disease.

The Balogs have fared better. Their second son, Joshua, is a carrier for the disease but does not suffer from it.

Zachary underwent the experimental surgery at the Weill Medical College of Cornell/New York Presbyterian Hospital in New York City.

Although doctors won't be able to gauge the success of the surgery for some time, the family's hopeful that if it doesn't help Zachary, it will at least help families in the future.

"It was nerve-wracking being the first ones to go through (the surgery)," Sue Balog said.

For now, though, the family must wait until his next doctor's visit in December to see how well the surgery has worked.

"The MRI will be the true test," she said. "The whole goal is to stop (the progression of) the disease."

Now, the family is continuing its effort to raise money to pay for the surgery and research at Cornell University.

To pay for the clinical trial, Nathan's Battle Foundation must pay a total of $2.1 million in quarterly payments during the next three years.

Because the funding for the study is not yet secured, the family - through its Zach Attack fund-raising efforts - are continuing to try and raise money for the research.

Most recently, the Balogs are selling $10 tickets to the PGA's Nemacolin Woodlands 84 Lumber Classic, set for Sept. 23 to 26. Tickets bought at or through the PGA sell for $22, but the money from all tickets bought through Zach Attack will go directly to the foundation.

Anyone wanting to buy tickets, make a donation, or to contact the family can do so by e-mailing them at sbalog1@zoominternet.net, by mailing them at Stephen and Susan Balog, 611 Gallahadion Court, Cranberry Township, PA 16088, or by calling 724-538-5611.