Copyright 2004 Stuart News Company
Press Journal (Vero Beach, FL)
July 29, 2004 Thursday INDIAN RIVER COUNTY EDITION
SECTION: LIFESTYLES; Pg. C1
LENGTH: 640 words
HEADLINE: Every second's precious
BYLINE: Elliott Jones staff writer

Vero Beach family is coping with the devastating reality that ALS, a deadly disease, will one day claim their loved one.

VERO BEACH -- Kenneth Bailey, 14, and his sister, Katherine, 12, were silenced by the question.

Kenneth clasped his hands together. Katherine pulled her legs up on the couch and crossed her arms.

After a long pause, he finally spoke: "You have to enjoy the time now. Hope for the best."

Their father, Kevin Bailey, has Lou Gehrig's disease, an incurable ailment. Bailey is expected to die within five years.

The children are having to grapple with seeing their father's body waste away. It was hard for them to speak about, as their father sat near them in an electric wheelchair. He had a brace on his left leg.

The exterior of his home, off Eighth Street, is brick. The decor is American colonial. His occupation is accounting. He is accustomed to putting financial details in order.

But the 38-year-old has no control over the disease that is slowly robbing his physical abilities. "He's independent," Kenneth said of his father, who likes to hike and camp. "It's hard for him to ask for help."

In May, Kevin Bailey could only watch as his father, Herb Bailey, nailed together a wheelchair ramp at their North Carolina cabin.

He couldn't help paint it, either. His right hand was too weak to paint.

A difficult diagnosis

Prior to Kevin's diagnosis in late 2002, the only sign of the disease was a weakness in his leg and ankle. Yet his father's brother-in-law showed similar symptoms before dying from a cancerous brain tumor. Tests showed Bailey doesn't have a tumor.

Steroids didn't erase another medical diagnosis, that it might be a form of palsy.

Finally, on Oct. 15, 2002, his neurologist told him the only likely remaining possibility was Lou Gehrig's disease. He learned, from his doctor, that he could die in five years or less.

Bailey went back to the accounting firm were he works with his father and didn't say anything. He focused on his computer, looking up information about his illness.

That night, at dinner with his children and father, he told them of the diagnosis.

His father choked up recently when recalling his granddaughter's response: "Daddy, you might not be here for my graduation."

It's hard to grasp. It's hard to accept.

Kenneth knew there was no denying it when he first saw his father with a cane.

"You can't tell yourself anymore that he will get better," the boy said. Father and son can't go back to the days when they raced model cars with Cub Scout Pack 551 at First United Methodist Church in Vero Beach. "It's getting worse," the boy said.

They know that time is precious.