"Once upon a time" is the way 10-year-old Chay Kampers begins all his stories. He loves to act out little stories about fishing or going to the beach or his father's deer hunting.

He can also -- with the help of his mother Susan Kampers -- tell the story of the fetal alcohol syndrome that is the story of his life.

"When we go talk in the schools, what do we talk about?" Susan prompts.

"Fetal alcohol," Chay says.

"And what is fetal alcohol syndrome?"

"Me and Trey."

Chay (pronounced Shay) and his twin brother, Trey, were born at 28 weeks' gestation weighing not much more than a pound each and bearing brain damage and physical deformities caused by their mother's abuse of alcohol when they were growing in her womb.

Alcohol dries up brain cells that would normally control everything from judgement to motor skills to memory to physical senses.

Ben and Susan Kampers of Appin were foster parents who were asked to take in one of the twins.

The Kampers were undaunted by the long list of Chay's birth defects. Susan Kampers remembers telling a friend, "I just want to go and get the little guy."

They brought Shay home when he was six months old and weighing nine pounds.

Three years later, they adopted him. But Kampers says she was thinking of adoption "even before we left the hospital. It took about four hours and I was determined I was going to adopt him."

September is the month chosen to bring attention to stories like Chay's.

In only four years, it has become a worldwide practice to ring church bells in the ninth month on the ninth day in the ninth hour at the ninth minute -- Sept. 9 at 9:09 a.m. -- to reflect the nine months of pregnancy.

In London, the Southwest Ontario Aboriginal Health Access Centre arranged the bell-ringing with three downtown churches.

"I don't think society knows as much as what it ought to know (about fetal alcohol syndrome)," says Laura Spero, the centre's community health advisor.

"We need to create more community awareness so women and their supports know alcohol, even a little bit, does damage."

Health Canada estimates one Canadian child a day is born with fetal alcohol syndrome.

Chay bears a wide range of symptoms.

His body never developed the adipose tissue that contains fat cells, so his tiny body is a much-too-lean 37 pounds.

He has a severe eating disability that requires him to eat pureed food. Unusual for a growing boy, he doesn't seem to have an appetite. His family thought him adventurous when he recently ate his first grilled-cheese sandwich.

"One of Chay's biggest problems is his inability to socialize," Kampers adds.

At home -- "his turf" as Kampers calls it -- Chay is a fun-loving boy with good manners that need only a little prompting.

But Kampers says, "He has a real problem with small children. If you put him in a room with 10 or 12 year olds, he'd be fine. But if there's smaller children, like all my grandchildren, he would have put himself in his bedroom five times in the last hour just because he couldn't take it."

Even in a school class of four disabled students, he was so stressed he quit eating, sleeping and speaking.

The Thames Valley Board of Education recognized the problem and now sends teacher Sherri Johnston to instruct Chay at home.

"It's proven to be extremely successful . . . " Kampers says. "Chay has done just totally amazing over the past year."

In a year, he learned to read at a Grade 2 level and to add and subtract.

But he can't be taken to busy surroundings such as a large family gathering or a restaurant at a regular meal time.

Even the kind of house the Kampers live in seems to affect Chay's behaviour.

Ben and Susan Kampers retired from their farm to Mt. Brydges, but found Chay couldn't adapt to the house's layout in which he couldn't see from room to room.

They moved to a fixer-upper north of Appin with an open-concept design. They will soon move again to Port Glasgow, where they have a weekend trailer, because they found the tiny community, including the children, so supportive of their boy.

Like other children with fetal alcohol syndrome, Chay doesn't have an internal clock that tells him when it's time to sleep. He has to be medicated to fall asleep. And Kampers says when he gets into his teen years, he'll likely experience a complete reversal and sleep most of the time.

She quips the timing will be perfect because by then she and Ben will be 65 and want to sleep a lot themselves.

But as older parents, they have to think seriously about Chay's life after they die.

"The possibility of him ever living alone will not exist," Kampers says. So they've lined up three sets of legal guardians for him.

"An FAS child is like sand and we're the bucket," Kampers says. "And as long as we keep the sand completely contained and surrounded, then the sand is OK. But as soon as you turn that bucket upside down and remove the pail . . . the sand just disintegrates and there's no form."

Kampers has a blunt message for women about this entirely preventable birth defect.

"The safe amount to drink when you're pregnant is nothing."

Spero says women who could potentially get pregnant should also abstain since they might not know they're pregnant until the second or third month of their term.

Spero also warns alcohol can pass to an infant through breast milk, causing damage to the baby's still-developing brain.

"You can't love them out of it, you can't educate them out of it. They are what they are," Kampers says. "It's the one birth defect a parent chooses to give their child."

FOR MORE INFORMATION

Contact Laura Spero, community health advisor, Southwest Ontario Aboriginal Health Access Centre, 672-4079, ext. 33.