Date: Fri 11-Sep-1998

Publication: Bee

Author: KAAREN

Quick Words:

health-Balakier-fund-drive

Full Text:

A Drive To Help A Child Who Has Faced Long Odds In Her Short Life

(with cut)

BY KAAREN VALENTA

Kathryn Balakier felt great while she was pregnant. Ultrasound tests did not

reveal any problems, and Mrs Balakier planned to return to work as a data

entry processor soon after the birth.

"I had a perfect pregnancy," she said. "I never expected to have anything

other than a healthy baby. Whitney was born right on her due date, during a

blizzard in February 1994."

But Whitney was born with a condition known as holoproencephaly, a midline

defect that manifests itself in many ways. She had a clef lip, no cartilage

structure in her nose, a hole between the lower chambers of her heart,

scoliosis, a convex chest, and the middle part of her brain was missing.

"We couldn't take her home from the hospital," Mrs Balakier said. "We really

didn't expect that she would live."

But Whitney was a fighter. She made it through the first few days, then weeks,

and Kathryn and Douglas Balakier finally were able to take their first child

home. But Whitney had swallowing problems. She frequently threw up what she

ate, and she wound up with pneumonia. When she was five and half months old,

the doctors inserted a feeding tube.

"They performed an operation so she can never throw up," Mrs Balakier said.

"Now, if she is strong enough, she may have open heart surgery in October."

Whitney can't sit up by herself, doesn't talk and will never walk. She is tall

-- 3'2" -- but weighs only 28 pounds. She requires round-the-clock care.

"The first year was the hardest," Mrs Balakier said. "The first eight months

she slept with us because we were afraid to leave her alone. But the older she

gets, the more relaxed we get."

When she was three years old, Whitney began to attend the Probe program at

Sandy Hook Elementary School, an early intervention program for pre-schoolers

who have a variety of cognitive, language, gross motor, and other problems.

During the past school year, the Probe program had 16 children enrolled and a

staff that included two full-time teachers and four assistants, as well as

part-time service from a speech pathologist, school psychologist, physical

therapist and occupational therapist.

"Whitney loves school," Mrs Balakier said. "Being with other children and

adults has been so good for her. She is so much more alert and active. She

knows what is going on -- she knows who everyone is. She holds her head up

much better now and is trying to lift herself up."

After Whitney was born, the Balakiers went for genetic testing and learned

that her birth defects were not an inherited condition. "It was a fluke -- one

in a million," Mrs Balakier said. In 1996, they had a healthy son, whom they

named Nicholas.

The Balakiers have lived in Newtown for nine years. After Whitney was born

they were able to move into a handicapped-accessible ranch-style house owned

by Mr Balakier's brother, who had been injured in a motorcycle accident and

was confined to a wheelchair.

"The house had been empty for three years because my brother-in-law had to

move back home with his parents," Mrs Balakier said. "So we have been able to

live here and pay whatever rent we are able."

Medical bills during the first two years ate up all of the couple's savings

and put them deeply into debt, she said. Although Mrs Balakier was covered

under the COBRA (continuation of benefits) medical plan from her previous

employer, the family had to pay the premiums as well as all costs that were

not covered.

"We thought we would be okay because the policy supposedly paid 80 percent of

the first $2,000 (in bills) and 100 percent after that," Mr Balakier said.

"But that was a joke. Either a procedure wasn't covered, or the cost was more

than what the insurance company allowed. By the end of the first year, we had

$20,000 to $30,000 in unpaid bills.

"It would take a lawyer to figure it all out," he said, shaking his head and

displaying two thick files bulging with bills and insurance statements. "It

was all too much -- I just started paying the doctors whatever was asked."

The Balakiers learned they would qualify for insurance through the State of

Connecticut, but as soon as they did, they had to find another pediatrician

because the one they were using would not deal with state assistance. Now,

they have insurance through Mr Balakier's employer. He drives a delivery truck

for a living and also does odd jobs to help pay the bills.

Once Whitney's heart is repaired, and surgery is performed on her spine, a

plastic surgeon will construct a nose for her. Whitney has a prone stander

that keeps her in an upright position to work at a table and a special

wheelchair is being fitted for her. But the Balakiers realize they now need a

wheelchair-accessible van. Their own vans, which are not wheelchair

accessible, are too old to convert.

"My van is nine years old and has 133,000 miles on it," Mrs Balakier said. "My

husband's is even older."

The Newtown Fund is accepting tax-deductible donations to help pay for the van

and for Whitney's other medical expenses. Checks should be made out to the

Newtown Fund (indicate in the memo line that the check is for Whitney

Balakier) and sent to The Newtown Fund at PO Box 641, Newtown 06470.