Let me begin by telling you what a great honor it is to be asked to say a few words about this remarkable young woman. I've spent the last few days trying to decide what to say -- what to tell you about her that I cherish the most. And I think I would like to talk about Heather, the teacher.

As Most of you know, Heather was a school teacher – and a very good one – and her life as a school teacher was very important to her and gave her a great deal of pleasure. But I want to talk about the other ways Heather was a teacher -- not just in school --  and specifically the lessons we -- the physicians and nurses who cared for her -- learned from this precious young woman.

The most obvious lessons Heather taught us related to the fact that she was born without one of the most important proteins of the immune system and was only the 2nd person in the world to be discovered with this kind of immune deficiency. It is remarkably rare and so everything that happened to Heather medically was an incredibly important lesson about this protein and how important it is to the normal function of the body in all of the rest of us who have this important protein. But those aren't the lessons that I want to talk about -- because those are the lessons that her disease taught us. Rather I want to talk about the lessons that Heather taught us -- the doctors and nurses who took care of her -- and those of you who knew her well --  about lessons she taught us about the human spirit -- important  lessons that need to be repeated over and over.

As many of you know, Heather spent a lot of time as a child in the hospital.  She dealt with painful tests, difficult treatments, and impersonal surroundings and in some ways missed out on some of the joy and innocence that is the gift of childhood. Physicians and nurses who take care of children like Heather often worry about what long term harm might be done to the child's spirit as the result of these medical tests and interventions and the child's loss of innocence. We wonder if they will become withdrawn and distrustful of other people, and view the world from a negative perspective. Frankly, we wonder if they will turn out to be well adjusted and productive adults.

One of Heather's admissions after her renal transplant some number of years ago -- when she was well into her 20's -- was for a blood stream infection and I arranged to have her admitted to the Children's Center since the staff there knew her so well. It will come as no surprise to you that she loved being on the Pediatric ward. It also will come as no surprise that the Pediatric Interns and Residents loved taking care of her and immediately developed a genuine fondness for her. In discussing Heather's case and management they commented over and over again on what a terrific person she was -- so intact, so connected with people, so well balanced, so outgoing and giving -- so normal! I tried to explain that she was a wonderful example of the triumph of the human spirit but I couldn't do justice to her.

I saw how much Heather had taught the intern and resident who were directly involved in her care so I asked Heather if she would be willing to be a guest "teacher" at our weekly conference in which we discuss an especially interesting or instructive case. She happily agreed. That conference is one of my most vivid and fondest memories of Heather. I presented her medical history in a few minutes and then turned the session over to Heather. There were lots of questions from the Residents – What was it like being so sick as a pre-schooler? Was it better to talk about a procedure before hand or simply get it over with? Did getting a hug from the Doctor make her feel better or did it just make the doctor feel better? What scared her when she was in the hospital? What were the hardest adjustments to make approaching adult life? Why did she pick a college so far away from a large medical center? Did her illness influence her choice of careers? Did she ever wonder why all this had happened to her? What was it like to be adopted? When did she first realize that the doctors were there to help her -- not hurt her? The questions went on and on -- I think it was the best teaching conference I have ever been to -- and Heather was the teacher. The residents were mesmerized by the strength of her personality, her determination, her remarkable accomplishments and especially what a remarkably intact and wonderfully normal human being she was. For years after, the Residents who were at that conference commented on Heather and that teaching conference and I know that because of her they understood what I had tried to tell them about the triumph of the human spirit that Heather exemplified so perfectly.

You all know that Heather was a gift -- to each and every one of us. But she was also a miracle -- she triumphed over a rare and devastating immune deficiency by becoming a happy and fulfilled young woman capable of loving and being loved. And in the end, the last lesson she taught me --and perhaps some of you -- is that we can not -- and should not -- measure a person's life in months and years but rather we should measure it in the happiness and joy that a person brings to others and the good that they do. And when measured in those terms -- Heather lived a full and incredibly meaningful life.

Remarks made by Dr. Winkelstein
Johns-Hopkins Medical Center, at
Heather's Memorial Service
December 20, 2003