ALL IN A DAY'S WORK
13 June 2002
"From the sublime to the ridiculous." I think that pretty much describes my
work day today. You couldn't really get any more distant extremes.
The day started on a somber note. I had a meeting with Dr. G's wife, Birdie. She was
hoping to enlist my help (she was successful) with a project she has just undertaken. I
don't know how much publicity this
story has received, but not enough.
Basically, it is the story of the Bennett family,
Alicia and John and their three children, Ciara, Hunter, and Tommy. Ciara is 6, Hunter is
4, and Tommy is 2. The kids look like normal kids, but they are all dying. All three of
They suffer from a metabolic condition called "Sanfilippo Syndrome," a
disorder that usually kills its victims before they reach the age of 20. The body lacks
the enzyme needed to break down sugar. The incomplete broken down sugars remain stored in
their bodies causing progressive damage to their brains, heart, muscles, etc. Sanfilippo
Syndrome is a rare disorder and the children usually only live to be 10-15 years old.
There is no known cure and only an experiment treatment, performed by only one hospital
in the country (at Duke University). It is too late for Ciara already. The disease is too
advanced, and additionally, as a result, she has suffered some mental retardation.
But Tommy and Hunter have a chance, if they can be accepted into the program and
The problem? Obviously, the cost. It will cost more than $1 million for the treatment
alone, and then the costs connected to their convalescence, which will also be
substantial. Not surprisingly, their insurance company has denied them coverage.
Birdie's committee has formed to work with the family (which has started Ciara's
in attempting to get the word of the children's plight out to the national media. I said
I'd be willing to do what I can to get the word out. I don't have any special connections,
but thanks to my work for Steve over the past couple of years, I have a lot of chutzpa and
I don't mind calling anybody to give them the information.
As a mother who knows what it is like to lose children too soon, my heart goes out to
these parents. Our children died suddenly and we had the joy of their presence until the
fateful day(s). These parents have to spend every moment knowing that their time with
their children is limited. I can't even begin to imagine their pain.
After Birdie left, we had our patients for the afternoon. It was a red letter day for
me. I know this must sound terrible, but it is a first, and so it was important to me. We
had a new patient, a somewhat large woman, who was coming in to establish with Dr. G. One
of my jobs is to record the relevant information on the chart and this was the very first
time in about 10 years that I can remember taking information like this on someone who weighed
more than I do. She doesn't weigh more than I did, so I'm certainly not going
to feel smug about it, but it's so rare for me to look at a weight and know that I weigh
less. I'm more accustomed to looking at a bulky linebacker or a heavyweight boxer and
realize that I outweigh him!
But the work day ended with the "ridiculous" part. I believe I've mentioned
that Dr. G's particular specialty is perimenopause and menopause. He deals with all
aspects of these middle years, not strictly hot flashes and osteoporosis. Lately he seems
to be seeing a lot more patients with low libido and he seems to be doing a lot more sex
counseling. (It certainly makes his chart notes a heck of a lot more interesting than the
This evening he came out after the last patient left. He had a little twinkle in his
eye and said "I have a job which is right up your alley. I need you to look for web
sites for me." He's right. That's definitely right up my alley, and not really his,
as he's only marginally computer savvy. What am I looking for? Tasteful sites where one
can buy vibrators.
You'll pardon me if I don't write any more. I think I'm going to be...uh...occupied
I wonder if I should charge him for the time I spend searching.....