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Girl succumbs to rare disorder

Autumn Bailey, who had a lung transplant as an infant, dies from complications at age 8.

© St. Petersburg Times
published January 5, 2003
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PINELLAS PARK -- When she was 2 months old, Autumn Bailey got new lungs. The tiny transplanted lungs saved her life. But Autumn's doctors made no promises about her long-term chances of survival.

"They couldn't guarantee us one day," her father, Todd Bailey, recalled. Autumn got nearly nine years.

The Pinellas Park girl died Thursday (Jan. 2, 2003) at Shands Children's Hospital in Gainesville after suffering a series of illnesses and medical setbacks.

"She's quite a fighter, a superstrong girl. But it was just too much for her," said her father. "She knew it was time to go."

Autumn and her best friend, Meagan Craig of Palm Harbor, were the first two infants in the world to get lung transplants because of a rare genetic disorder.

It was sheer coincidence that both were from Pinellas County. The girls, born a month apart, grew up at each other's side, two bright and active kids bound together by their common beginning in life.

Both lost most of their hearing because of medications they received as babies, so they learned sign language. They played and attended school together, sharing secrets with discreet signs.

While Autumn died nine days shy of her ninth birthday, Meagan remains healthy. But she's having trouble understanding that her companion is gone.

"They were like sisters, like twins, almost cloned together," said Meagan's father, Mike Craig. "When we told Meagan that Autumn is an angel up in heaven now, Meagan kept telling us, 'You're lying. You're lying.' "

The girls were born with surfactant protein B deficiency, which causes the lungs to fail. Babies born with the deficiency can't breathe without a ventilator because they lack a protein that makes surfactant work. Surfactant is a natural chemical that keeps lung airways open.

The girls' parents also are close friends, who have struggled together emotionally and financially to keep their children alive. Todd and Lauri Bailey are detention deputies for the Pinellas County Sheriff's Office. Mike Craig is a construction worker, and Diane Craig is a former legal secretary.

Autumn took medications every day to keep her body from rejecting her transplanted lungs. But the medicine also suppressed her immune system, making her more susceptible to illness.

Her parents watched her closely but tried not to be overprotective. They let her run, swim and play.

And Autumn was strong-willed. In 1999, for instance, the Baileys weren't planning on sending Autumn to preschool. But on the first day of school, when Autumn's fifth-grade sister, Mackenzie, traipsed off, Autumn protested.

"Where's my bus?" she asked her mom over and over. "Where's my bus?"

A Girl Scout, she was fond of animals, crafts and math. She attended Cross Bayou Elementary School in Pinellas Park, which has a program for deaf students.

The past year was hard for Autumn because her body began rejecting the lungs. She had been in and out of hospitals since September and had been at Shands for the past three weeks.

She would play with a toy magic wand, practicing being an angel.

"She outlived the doctors' expectations," Todd Bailey said. "We wish we could have had her forever. We feel special that God gave her to us for this amount of time."

Survivors include her parents; three sisters, Heather Bailey and Mackenzie Waldron, both of Pinellas Park, and Kristina Bailey, Farwell, Mich.; her paternal grandfather, Jack Bailey, St. Petersburg; her paternal grandmother, Donna Fron, Harrison, Mich.; and her maternal grandparents, Roger and Bonnie Charles, Randolph, N.Y., and Larry and Barbara Waldron, Asheville, N.C.

Visitation will be from 2 to 4 p.m. and 6 to 8 p.m. today at Moss-Feaster Funeral Homes' Serenity Gardens Chapel in Largo. The funeral will be held there at 11 a.m. Monday.

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