Kirsten Guptill, above, is cuddled by her sisters, Julie. left, and Lisa, right. Below, Kirsten, who has a rare chromosomal defect called trisomy 18, plays with her mom, Diana Guptill. Photos by Dennis Oda, Star-Bulletin

Born with trisomy 18, a chromosomal brain defect that nearly always proves fatal, Kirsten had to contend with congestive heart failure, sleep apnea and pneumonia in the months after birth. She had a paralyzing stroke at seven months.

For the other Guptills - Diana and Neil and children Michelle, Julie, Lisa, Douglas and David - Kirsten has meant tube feedings, oxygen masks and all-night bedside vigils.

Together, the Guptills have battled back from every reversal.

She's also meant great joy in small victories, a shared family bond and daily lessons in unconditional love.

Kirsten, all 3 feet, 221/2 pounds of her, turns 6 on April 2.

"She paid her dues," said mother Diana. "She spent the first 17 months just surviving."

And the next 55 bucking the odds.

According to researchers, one in every 8,000 babies are born with trisomy 18, which is an extra chromosome in their 18th chromosome. Just 30 percent make it through their first month and half of those survive seven months, said Oahu physician Raydeen Busse.

Diana Guptill calls Kirsten her "change of life baby." At 39, her pregnancy came as a surprise. When the fetus was diagnosed with the defect, she and her husband, both active Mormons, opted to see the pregnancy through.

The ensuing six years have affirmed their decision just the same, said Diana.

"Each day is a gift," she said. "I'm very grateful that she's alive. I know that one day she'll have to go back to her heavenly father. . . . She's touched many lives. For us it's been a joyful experience."

Four pounds, 2 ounces at birth and seven weeks premature, Kirsten wasn't born blind or deaf like many trisomy 18 babies. But her heart was weak, her bones wafer thin and her grip on life tenuous.

Although Kirsten's prognosis is still clouded, her doctors have given up predicting her life span.

The Guptills say they're prepared for any eventuality.

"For some people, death can be a tragedy," she said. "I view it as the next step."

For now, the Guptills revel in Kirsten's relative good health and the milestones along the way. Like the day she learned to crawl and crumpled up brother Douglas' homework. And her birthdays.

Diana Guptill credits Kirsten's survival against the odds to her grit and an early regime of physical therapy. Her once mushy muscles have tone thanks to regular exercising.

She credits her family's upbeat attitude to faith in God and a nationwide support group - Support Organization for Trisomy 18, 13 and Other Related Disorders. Given the rarity of surviving trisomy babies and the paucity of information on the defect, the group disseminates valuable information to parents, Diana Guptill said.

"I believe that handicapped children should reach their fullest potential within their given limitations," said Diana Guptill.

"If people would just accept these children. Be grateful for who they are. Don't try to change them into the perfect child."

From eight-year-old David's perspective, Kirsten is the perfect child. "She's cute," said brother David. "I love her."