Last year, around this time, our annual fund-raising campaign on behalf of Children's Hospital recounted the story of a girl named Katie. She was suffering from a rare brain stem ailment, and needed constant life support. Katie died last summer. But this year, the same family is suffering through the same ailment -- this time in their son, who was born just three months ago. My associate, Deborah Schwartz, has the story of a little boy named Stevie. All Greg and Jeni Stepanek ever wanted was to be parents. They dreamed of having two or three children who would run and play and laugh and bring them happiness.

Their first child -- Kathryn Mary -- was born a little more than two years ago. But Katie was immediately discovered to have brain stem dysfunction, a condition that affects the autonomic nervous system. The condition was so severe in Katie that her breathing and heart rate were dependent on machines almost from the first moment of her life.

Katie was on complete life support for the last four months of her life. She died in July at Children's Hospital, at the age of 19 months, having spent most of her life as a patient at Children's.

When Jeni Stepanek became pregnant shortly after Katie's first birthday, she and Greg were thrilled.

Steven Michael Stepanek was born on Sept. 22. But it became clear immediately that Stevie, too, had brain stem dysfunction. Once again, home for the Stepaneks' baby became Children's Hospital.

Stevie Stepanek spends every minute of every day fighting for his life. His world is filled with complicated life-support machines. He is given oxygen constantly, and his heart is monitored continuously.

Stevie recently underwent four surgical procedures. A tracheotomy was performed to help him breathe with less effort. A gastrotomy (insertion of a tube directly into the stomach) will allow him to be fed when he's asleep or too weak to eat. A nissan (wrapping the top of the stomach around the esophagus to prevent reflexive muscle contractions) will make it impossible for Stevie to vomit. And a pyloroplasty (the cutting of the muscle at the base of the stomach) was performed so that Stevie's food will slide directly from his stomach into his intestines.

Stevie needs all the calories he can get. The most he has ever weighed is seven pounds -- a pound above his birth weight. As he approaches his 3-month birthday, he again weighs six pounds. The average child his age weighs about twice as much.

When doctors operated on Stevie on Dec. 8, they discovered he was missing half of his vagus nerve. The vagus is the part of the autonomic nervous system that controls the size of the pupils in the eyes, slows the heart rate and stimulates certain digestive glands.

Because of the missing vagus nerve, food would just sit in Stevie's stomach. His body would not pass it into the intestines. Eventually, Stevie would throw up. As a result, he would not grow.

"We were told if he did not have surgery he probably would not live another week," said his mother.

"We now suspect there may not be the other end of this nerve up into the brain stem; {that it} may also be missing, which would explain what's going on with his autonomic {nervous system}," she said.

" . . . . It's sad. But at least we can put a finger on something. For two years now we've been dealing with this unknown brain stem dysfunction that reveals itself in symptoms. And all of a sudden we see that the nerve that controls all of these symptoms just isn't there. He wasn't born with it."

Katie had exactly the same type of surgery, but she was about a year older than Stevie when it was performed on her.

The doctors don't know if Katie was also missing part of her vagus nerve. But the symptoms in the two children are almost identical.

Dr. Robert Fink, the Stepaneks' primary physician, doesn't know why both Stepanek children were born with this life-threatening dysfunction.

Dr. Fink said that, before Stevie was born, there would have been about a one-in-a-million chance of Jeni giving birth to a second child with brain stem dysfunction. But "if it's happened a second time, unfortunately, it becomes somewhat likely" that it would happen a third time, Dr. Fink said.

Dr. Fink speculates that the cause of this dysfunction is genetic. But because of the delicacy of the brain stem, it would be dangerous to test Stevie.

"That area of the brain is so vital to all of your normal functions that it's not an area you can touch surgically or biopsy. You don't want to take a little piece out {because} you may lose control of breathing or heart rate or something," said Dr. Fink.

The last couple of weeks have been among the hardest for Jeni and Greg Stepanek.

On Dec. 6, Stevie was baptized. A year earlier, on that date, the Stepaneks were celebrating Katie's first birthday (she was born on Dec. 10). The memories and comparisons were inevitable.

"I kept thinking a year ago today, all these people, every one of these people were here plus three times as many, and Katie was there," said Jeni Stepanek.

"And she just had the time of her life. She thought it was great. And all I kept thinking was what we would have been doing on Sunday {Dec. 6} with her this year and what she would have worn, what she would have looked like."

Greg Stepanek said he was "so happy" to have had Katie. He said she brought the couple "a lot of joy." He talks optimistically about watching Stevie grow up and go to school.

But the doctors are being much more realistic about Stevie's prognosis.

"The key thing we're telling {Jeni Stepanek} is that Stevie doesn't look good and might well die," said Dr. Fink. "By 6 months of age, if he doesn't show improvement, the likelihood of long-term survival is unlikely.

"Medically, we don't control the outcome. Everything we do is supportive care." Whether the brain stem ever gets better is "beyond our control," Dr. Fink said.

Jeni and Greg Stepanek refuse to be negative. They focus relentlessly on the future. They sit outside Stevie's hospital room and brainstorm ways to buy a special wheelchair-lift van that would be needed to transport him and all of his life-support equipment.

They talk about their son graduating from high school. They dream of the children Stevie will have and the happiness he'll bring them. They spend endless hours hoping.

His mother says she has a lot of faith in Children's Hospital. That wasn't always true.

Stevie was born and his ailment was diagnosed at Holy Cross Hospital in Silver Spring. As soon as it became clear that he needed specialized treatment, his mother said she hesitated to bring Stevie to Children's because Katie had died there. But she says she reconsidered because she knew it was the best place.

"If anyone can help {Stevie}, Children's Hospital can," she said.


Make a check or money order payable to Children's Hospital and mail it to Bob Levey, The Washington Post, Washington, D.C., 20071.