-by Lee Reeves, Michigan

"This is the meanest umbilical infection I have ever seen", scolded the young resident as he admitted my ten day old daughter to the hospital. "No, you can't breastfeed her. We don't want to increase the risk of infection. No, you can't stay overnight; it's against hospital policy."

The intimidating words of the self-assured resident reflect the tone of hospital pediatric wards in 1976. His comment on my daughter's condition illustrates the ravaging power of an army of bacteria in the defenseless system of a neutropenic child.

Following our two week hospital stay, my husband, Louis, and I enjoyed a few short weeks of normalcy with our new baby. But soon our lives would be dominated by countless visits to baffled pediatricians, mysterious fevers, an endless variety of antibiotics, blood tests, x-rays, and special diets and vitamins.

Eventually a liver abscess was discovered, and soon Leta's pain was given the exotic name congenital agranulocytosis. We were never told her condition was extremely rare, and that she probably would not live to be an adult. The quality of her life would be compromised by recurrent life-threatening infections.

I launched a personal campaign to educate myself on this rare disease. I learned about stem cells and their stunted proliferation in neutropenic patients, and although there was a liturgy of names for this disease, very little seemed to be known about it.

After reading all of the medical journal articles I could locate, I decided to call Doctor Laurence Boxer whose name appeared frequently in the medical literature on Neutropenia. Just days after my first phone call to Riley Children's Hospital in Indianapolis, Indiana, Leta and I were on a plane to meet doctor Boxer in hopes of a treatment unknown to our Michigan physician.

Doctor Boxer confirmed the diagnosis and tried several of the treatments being explored to help neutropenic patients. My hopes faded with the unchanging test results. I learned that my daughter's stem cell activity diminished after the second of five stages of proliferation. No internal predator could be detected; the conclusion was that the stem cell, though normal in appearance, was just unable to provide the first line of bodily defense for which it was destined.

Although the news in Indiana was disappointing, I felt more secure after meeting Doctor Boxer. At least my daughter had a champion, one who was knowledgeable and actively investigating her disease. I know Doctor Boxer would welcome calls from my doctors when they were unsure of the best course of treatment.

As the years passed, we learned to live with hospitals, antibiotics, needles and anxiety. We learned to value the good times and make the best of life in what was to become our second home, the hospital.

Our calls to Doctor Boxer became infrequent, but I thought about him often, hoping that some research would identify a catalyst that would jump-start the lazy neutrophils in Leta's bone marrow.

After five years our family, which now included a healthy one year old boy, Skyler, we moved to the Ann Arbor area. I decided to visit the children's hospital to introduce myself. When I arrived at the pediatric hematology department and looked at the name plate on the director's door I was incredulous. "Are there two Doctor Boxers who are pediatric hematologists?" I asked the department secretary. She replied, "Doctor Boxer is our new department head." I was pleased and surprised. She continued, "He just moved here from a hospital in Indiana."

In minutes, I was talking to my old friend. He called our meeting "fortuitous," and asked me if I could take a few minutes to meet someone special. Leta, who was five and feeling healthy was always enthused at the prospect of meeting new people.

We followed Doctor Boxer to one of the dreaded treatment rooms where we were introduced to an anxious mom with a sad eyed, frail young boy. Doctor Boxer didn't have to tell me the two year old boy had the same rare affliction as my daughter. I empathized with the despair of this sad mother, and was glad to give her some hope in the encounter with my happy daughter.

Over the next eight years, the hope and optimism we shared at that moment was clouded by many difficult trials. Yet the hope we felt that day pales in comparison to the unparalleled joy experienced by our families when Doctor Boxer called to let us know there was a new medication being tested for neutropenic patients, and the results had been promising. Normal white blood counts had been confirmed just days after taking this new drug.

As the heirs to an incredibly rare disease our children have always been unique. As the recipients of the elusive medical miracle brought to us by Amgen and years of tireless research, our children have a rare place in medical history, and as parents we are blessed.....and grateful.