Note: Earlier this year, we introduced you to Chris and Valerie Grady and their family, of Upper St. Clair. The couple's two young sons, Drew and Trent, have the rare Batten's disease, which causes deteriorating brain, nerve and muscle function. It has no known cure. We checked back to see how this extraordinary family celebrates the holidays and share their continuing story of hope.

Val Grady was nervous when the house next door went up for sale in Upper St. Clair.

Her 3-year-old was suffering from increasingly frequent seizures and was losing his motor skills, and she had a year-old toddler as well. She and her husband, Chris, were trying frantically to cope while dreading each new medical evaluation.

"I told Chris, 'I don't know if I can handle it if a family with, like, six perfect kids moves in. Our life is so screwed up,' " Mrs. Grady said.

Then she met her new neighbor, Margie Kondrich.

"I just want you to know that my daughter has Down syndrome," Mrs. Kondrich said about a minute into the conversation.

"I had decided that I was just going to make sure people knew up front," Mrs. Kondrich said. That way there would be no double-takes, no face-making, no surprise when they met little Chloe.

"That was like the biggest relief in my life," Mrs. Grady said, sitting at her dining room table with Mrs. Kondrich. "I was, like, 'Phew! We can be normal. We can be real.' "

The two women are now all but inseparable, supporting each other, loving each other's children and helping each other care for them.

They also are now in-laws -- sort of, anyway.

Mrs. Grady's older son, Drew, eventually was diagnosed with Batten's disease, an inherited disorder that disrupts the body's waste-removal systems. Rather than getting into the blood stream and filtered out, waste products build up, attacking brain and nerve function. Now 5, Drew is blind, can't speak, has little control over his muscles and depends on a feeding tube for sustenance.

But he can still love and be loved. That's where Chloe Kondrich comes in.

"The sicker he got, the more devoted she got to him," Mrs. Kondrich said, watching her daughter cuddle up to the little boy's thin body. "She gives unconditional love, and he gives her the unconditional love she needs."

In her innocence, 6-year-old Chloe wanted nothing more than to marry Drew. So the two families fulfilled her wish, staging a little mock wedding, complete with a tux for him and a gown for her.

Word of the event got around the community, and a local charity called Jamie's Dream Team got wind of it. On Sunday, the White Oak-based nonprofit that makes dreams come true for people with life-threatening illnesses, sponsored a full-blown wedding reception, complete with a horse and carriage, a firetruck and a big party.

"It was a wonderful day," Mrs. Kondrich said.

And it's just one small part of an outpouring of care the community has lavished on the Gradys. There have been pancake breakfasts, spaghetti dinners, fire department fundraisers and benefit concerts all over the South Hills and beyond.

A local sports artist donated a signed painting of Steeler Troy Polamalu, which raised about $3,500. The basketball coach from one local school district donated his coaching stipend, with the condition that his name not be made public.

The Upper St. Clair Middle School Choir went caroling and collecting funds, then caroled at the Gradys' house and dropped off the money. Sto-Rox High School, where Chris Grady teaches physical education, has launched a variety of fundraisers and two students are sending a video to Oprah Winfrey.

The goal is to raise money for Drew to get into a clinical trial being planned at Cornell University in Ithaca, N.Y. Researchers there plan to inject stem cells to stimulate Batten's patients' bodies to handle waste products. Since Drew is in an advanced stage of the disease, it will cost $250,000 to $500,000 for him to be treated.

His little brother, however, will get into the trial for free. Trent, now 2, has Batten's as well but so far is non-symptomatic -- making him the perfect candidate for the research effort.

"They're not looking at a cure," Chris Grady said. "They're hoping to delay it."

As he spoke, Trent had a plastic hockey stick in one hand, a corn chip in the other and a big smile on his face, looking like a typical 2-year-old.

The Gradys agreed with the obvious: It's difficult to handle the emotions knowing what's ahead for Trent.

"He gets away with murder," Mrs. Grady said. "When Drew was 2, he'd dump a box of cereal on the floor and I'd get so mad. Now Trent will do the same thing -- typical 2-year-old stuff -- and I'm like, 'Ha ha ha! Daddy will clean that up when he gets home!'

"We know to cherish them, to cherish each moment. A lot of families don't know to cherish their time."

Mr. Grady said for him, the key is not to look back and not to look forward. He can't even watch videos from a few months ago because Drew's deterioration is so clear.

"If I stay in the present, I'm OK. I don't want to look back at what was."

"You live right now, right this moment," Mrs. Grady said. "You don't think about what's to come. You can't."

They know there's no time to waste.

"Like any parents, we want to give them the best life possible," Mrs. Grady said.

"It's like you've got to fast-forward everything," Mr. Grady said. "Things we want to do with them, we need to do them now. We don't have a lifetime to be with our kids."

A Web site has been established with background about Drew and Trent. It also enables visitors to submit donations to Grady's All-Stars, a trust for the medical equipment, treatment and therapy of the boys. Visit www.gradysallstars.com.

For more on Jamie's Dream Team, call 412-377-3898.

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