Sunny 5-year-old Samantha Refuses To Surrender To Fatal Bone Disease

September 23, 1990|By Robert Lee | Robert Lee,Staff writer

A funeral is an unlikely cause to rally around for a fund-raiser, especially when the 5-year-old girl whose funeral it will be is still alive.

But this will be no ordinary funeral, because Samantha Battaglia is not your ordinary terminally ill patient.

"Ever since she was born and the doctors told me I could leave and not bother coming back to the hospital because she was going to be dead, I've tried to make her whole life like a fairy tale," says her mother, Angela Cochran. "I want her to leave the earth in a fantasy carried by six white horses and a carriage."

Born with an acute case of the rare genetic bone disease osteogenesis imperfecta, also known as brittle bone syndrome, Samantha is now only 2 feet tall, with the body of a 9-month-old child and the head of a 5-year-old.

Children with acute brittle bone disease like Samantha's -- labeled "type 2" -- do not generally survive their day of birth and almost never live past their first year.

But you could never tell it by talking to Samantha.

"Hi! Hi! Hi!" she chirps through her ventilator to a contingent of seven strangers touring the hospital.

One member of the group looks into her ward, at the child hooked up to four separate machines, with a mixture of curiosity and pity on his face. But Samantha's glowing, smiling face, which makes up half of her body, immediately changes his expression to one of delight.

"She's got him. She does this all the time," her grandmother whispers as the entire group gathers around, waving and smiling at Samantha.

Sam then blinks and wiggles her legs, her own sign language for "I love you a lot."

Although nobody understands the sign, everyone understands the gesture.

"Sam has a lot of love for everybody. She is a remarkably well-adjusted child socially," explains Peggy Smeltzer, Samantha's special-education kindergarten teacher. "She can bring anybody up, nurses, doctors me . . . She's not aware at all of her condition."

Her condition keeps her bones from hardening. Since they are so brittle, her bones can easily break in even the most routine circumstances -- when her diapers are changed, or when she leans too long against the wall of her crib. "Her insides look like a road map on an X-ray," her mother says.

The broken bones don't hurt her any more, but they cause her temperature to rise dangerously high, her mother says. Samantha's heart has stopped beating 11 times during these fevers.

Cochran claims to have revived her daughter once by stroking her hair and kissing her cheek while doctors and nurses groped for defibrillators.

"The doctors looked at me and said: 'How'd you do that?' I said you have to have faith in your child. I've dedicated the last five years of my life to giving her everything that the world has taken away from her."

Cochran is satisfied that she has made her child's life a happy, playful fantasy. And she says she now wants to send her off in the same fashion.

"So many kids in Sam's condition, when they die, everyone just wants to forget them and be glad it's over," she says. "I want everybody to remember how happy she was."

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