N.Y. family seeks answers for boys with rare disorder

MACHIAS, N.Y. -- Four-year-old Dalton Eisenhardt and his 2-year-old brother, Wyatt, don't protest or complain about the machines that hold onto them with tubes and cords during every moment of their lives. Despite the tracheotomies, the feeding tubes and ever-present nurses, the boys smile.

It is harder for those who love them.

The young brothers are fighting a rare and puzzling chromosome disorder, and doctors in Buffalo, 45 miles north, have been unable to find anyone anywhere with the same condition. They cannot tell the Eisenhardts what might come next, what toll the disorder ultimately will take.

So far, dozens of hospital stays, surgeries, doctors' appointments and consultations have produced only more questions. The family hopes that by telling its story, a doctor or other parent will recognize the disorder and tell them what to do.

"We don't know what to expect," said their mother, Vicki Eisenhardt, in the living room where she spends most of her time caring for her two youngest sons while her husband works as a carpenter. A 10-year-old brother, Tyler, is healthy.

"What we know we've learned from Dalton," she said.

The boys have a disorder called unbalanced translocation chromosome 15. Their mother explains the chromosome has an extra piece, a slight defect that affects every organ in the boys' bodies.

A year ago, doctors gave Dalton six months to live, saying the damage to his lungs was too great.

"Here we are a year later," his mother said. "Doctors can speculate, but only God knows."

"We're not giving up," added her sister, Kim Claus, one of several nurses who cares for the boys full-time.

19 surgeries

Dalton has been hospitalized 34 times and undergone 19 surgeries. Worrisome episodes where his skin grows gray and clammy have been increasing. Wyatt spent 100 days in intensive care after his birth. His problems have mirrored his brother's.

Snuggled into his mother's lap one afternoon this week, Wyatt grinned at visitors as his brother slept, blue breathing tubes spilling from both their necks. On this day, Dalton was tired and would spend most of the day in bed. Wyatt was just up from a nap that had been interrupted to have a buildup of saliva suctioned from his tube.

Dalton has an appointment next week with a specialist in New York City. This week the family was scrambling to secure a flight after learning the small airline that initially offered tickets could not fly the oxygen tanks the boys need to breathe because of federal aviation rules.

"This is not a trip of luxury. This is a trip of necessity," Eisenhardt said, frustrated at the obstacle.

The boys' beds and shelves full of supplies and equipment have taken over the living room. Nurses, therapists and medical supply deliveries create a revolving door in the family home, and although insurance pays most costs, unseen expenses like the electricity needed to power the machines add up.

But the family does not tell its story for pity -- even their neighbors in this Cattaraugus County town of 2,400, have been unaware of their plight.

The family keeps to itself, Eisenhardt said, but is at the point where answers are needed.

"When you see your 4-year-old say he hurts, grabbing his chest and so tired he can't walk across the floor, you want to help," Eisenhardt said. "You're going to do anything and everything you can to help him."