Valerie and Chris Grady want so much for their two young sons, but from the outside looking in, it doesn't sound extravagant: To see their kids playing in the yard, running around at school, learning to recite their ABCs.

Yet it would take practically a miracle for that to happen, one they don't plan to stop pursuing until there's nowhere else to go.

Drew, 5, and Trent, 2, each inherited a gene that affects the body in devastating ways. Their family struggles daily with the effects of the infantile form of Batten disease, an extremely rare condition caused by mutations in the soluble protein of cells in the body.

At least nine different kinds of Batten disease exist, all with different types of mutated genes, all fatal. Those affected in the early onset version experience decreased brain volume, progressive deterioration of nerve and muscle function, and often blindness.

Life expectancy usually is late teens.

Batten disease affects perhaps two to four children of every 100,000 live births worldwide. There is no known cure, although expensive options exist in pursuit of anything to at least slow the progress of the disease.

The Gradys, who grew up in Bethel Park and live in Upper St. Clair, have had long discussions on the pros and cons of stem cell treatments in China -- which cost at least $30,000 per treatment, with four treatments in the cycle -- or possibly participating in a gene therapy trial at Cornell University -- at a cost of more than $500,000 per child.

The Cornell study is currently $2.5 million short, said Mrs. Grady, so the families of the five children accepted in November will have to make up the difference.

Neither treatment is covered by insurance and both have risks. According to Dr. Jon Cooper, head of the Pediatric Storage Disorders Lab at King's College in London, another approach uses enzyme replacement but it has not been cleared for trials involving humans.

The everyday expenses also add up, and many necessary items -- such as the special car seats at $1,000 apiece or a $300 pediatric life vest -- are not covered by insurance.

Even when equipment is covered, waiting for authorization can be frustrating, Mrs. Grady said. A piece of equipment to help maintain Drew's gait when he walks, she said, took 14 weeks to arrive by the time it was approved by the insurance company.

"Once you lose your gait, it's not coming back," she said. "I wish I could have gotten it and battled with the insurance company later."

Insurance did pay for a $2,000 motorized wheelchair but that, too, was a back-and-forth struggle, she said.

A general trust fund has been established for the boys' needs, and friends of the family are organizing a fundraiser Sept. 27 at St. Valentine Catholic Church in Bethel Park.

"The church has graciously donated the use of the hall, and we're hoping to pull in a thousand people," said family friend Sue Beeson, who is helping arrange the pasta dinner.

"Right now, we have 750, according to tickets."

In addition to a full dinner, a ticket auction and raffle for gift baskets will be held. The food is being donated by a local restaurant. Serving staff from a church in the North Hills, where one the boys' relatives works, will cross a bridge to help out that night.

Co-workers at the Downtown printing company where Mrs. Grady works and Mr. Grady's colleagues at Sto-Rox High School have contributed in ways big and small, they said.

One friend arranged a benefit golf outing, and a rock concert is being discussed to raise money. One of Mr. Grady's colleagues is local rocker Joe Grushecky, who has promised to arrange a benefit concert this winter.

Little more than two years ago, the Gradys were a typical young family with typical concerns. Shortly after Drew turned 3, however, he began experiencing an escalating series of seizure activity.

Medication seemed to help, and adhering to a Ketogenic diet helped even more. Such a diet is high in fat and low in carbohydrates and is used to control seizures.

Drew eventually underwent vagus nerve stimulation implant surgery, in which a small battery sends electric impulses to the brain.

Mr. Grady had experienced petite mal seizures as a child but outgrew them. The family clung to the expectation that this would also be the case for Drew, but his activity worsened.

"We were in denial," Mrs. Grady said. "We were constantly thinking it was something else."

More trips to specialists provided little explanation. MRIs and other tests showed that Drew had suffered brain volume loss, and he began having more than a hundred seizures a day.

"I began surfing the Internet for an hour and a half a night," said Mr. Grady, a high school physical education teacher.

Having another child provided a much-needed distraction from the constant worry: "We are so blessed with him. I probably would have curled up in a ball, but I had a 2-week-old baby I had to take care of when [Drew] started having seizures," Mrs. Grady said.

Drew had begun dropping things, tripping over his feet. The family was told to take him to the Cleveland Clinic, where in March, they at last had a diagnosis.

"They had told us it was probably one of three things, and that [Batten] was the worst," Mrs. Grady said, holding the slender blond child on her lap as the family gathered around a table on the lawn of their home.

Shortly after Drew's diagnosis, they had his younger brother tested. The results were almost too much to believe.

Trent has speech-delay issues and is learning American Sign Language. But for now, he is a vibrant toddler, another towhead chasing neighborhood friends across the driveway.

He is not yet on any daily medication, but his brother takes three to prevent seizures.

Much of what has been done for Drew involves trying to halt the effects of Batten disease. In Trent's case, given more time, the family hopes to be able to forestall symptoms until an effective treatment is discovered.

But naturally, they have fears. On the family's Web site, www.gradysallstars.com, Mrs. Grady wrote in her blog:

"It is heartbreaking to watch Trent push his brother's walker around, knowing that one day it will be his.

"When I thought of hand-me-downs, I was thinking shoes and clothes, not wheelchairs and walkers."

Next-door neighbor Chloe Kondrich, 6, bounded up to Drew and gave him a quick kiss.

"He's my boyfriend!" she said, running off.

"Drew has one of the best support systems in Chloe," Mrs. Grady said, producing a small scrapbook of photographs from the families' summer visit to Myrtle Beach, S.C.

Because swallowing can be difficult, Drew, who weighs 30 pounds, is scheduled to have a feeding tube implanted in the near future.

He began kindergarten at a new school this year, accompanied on the bus by a nurse to The Children's Institute in Squirrel Hill. Drew had been attending A Child's Way in Lawrenceville, a program sponsored by the Mario Lemieux Foundation. Trent, who is dropped off at in-home daycare, eventually will attend A Child's Way.

In addition to school, both boys attend physical and speech therapy sessions as part of their long, busy days.

Hockey holds special delight for Drew, who enjoys watching baseball and football as well. His mother said that one of the most difficult aspects for him in adjusting to his condition is his frustration: He sees other kids playing ball and cannot join in.

The family said the Penguins have arranged for Drew to meet the players, and he was the guest of Mr. Lemieux for a Stanley Cup playoff game. The Washington Wild Things baseball team also has pitched in; Drew threw out the first pitch at a game this summer.

"When he's with them [watching games, meeting players], he gets a whole different face," said his grandmother, Beverly Sughrue, of Coraopolis.

The family is hopeful, but it also knows the odds.

"Research is out there, it's so important," Mrs. Grady said. "If it's not something to help our kids, then the next generation."

Contributions may be sent to Grady's All-Stars, 3325 Forest Road, Bethel Park, PA 15102. For more information by phone, call 412-726-1090.