-by Stephen and Barbara Johnson, Oak Harbor, Washington

Hi! We are the Johnson family. We would like to introduce our family to yours and share some of our experiences of having a child with neutropenia.

Our names are Stephen and Barbara Johnson. We've been married 20 years. Stephen has been an Air Traffic Controller in the US Navy for 18 years. I do volunteer work, and work as an Instructional Classroom Aid (Paraprofessional).

We have two children. Stephanie is our oldest. She is seventeen and a junior in high school, an authentic typical teenager. Stephen "Adrian" is fourteen years old and in the seventh grade.

Adrian has chronic neutropenia. His first hospital stay was at 4 weeks old for an infected tear duct. Adrian was diagnosed with neutropenia at ten months of age for an infected tear duct. After two abscesses on the side of his head could not be surgically treated, the true cause of his infection was discovered three weeks later. Over the years Adrian has suffered from over 30 different cases of otis media (ear infections), numerous oral infections; the worst is bone loss and ulcers. Adrian contracted an infection in his lungs at age six; aggressive antibiotic treatments had no effect and an abscess developed on the upper right lobe of his lung and the entire upper right lobe had to be removed. This was the scariest time we had to face as we almost lost him. Since then it seems one can condition oneself to handle almost any situation as y'all (that's Texan for "you guys"), probably have realized. At 9 1/2 he was hospitalized for a blood infection from what started as a paper cut. That turned into yet another hospital stay.

Through the years we lost count of the hospital stays. My husband's Navy career has taken us many different places and fortunately one of them was San Diego, California, in 1988. While stationed there we learned about the G-CSF program. On January 5th, 1989, Adrian was placed on the protocol program. Those of you on the G-CSF program know the results. Those that are unable to obtain the drug we hope and pray that you will be able to get it soon. Since his acceptance, Adrian has not suffered a single illness or hospitalization. His dental problems have reversed and tooth extraction may not be necessary, with aggressive treatment.

We appreciate you allowing us into your family with our story. We have gone through many crises and they never seem to end. Again, thanks for listening.