Life is an alphabet soup made up of only four letters: A,C,G and T. You would think this could get boring. Instead, it has led to a code of life more complex than any cipher crafted by supercomputers at the National Security Agency.
The four molecules, adenine, cytosine, guanine and thymine, produce amino acids. These in turn give rise to proteins, which lead to enzymes. The enzymes carry out the necessary functions of chemistry to sustain life on the planet.
When the intricacies of chromosome 4 were finally untangled, what scientists found was that C,A,G, three of the four letters of life, were repeated in a kind of chemical poetry on the chromosome. It is the number of repetitions in that sonata that determined the fate of Penny Boyd.
If the word CAG were repeated ten times or twenty times or even thirty times, she would be fine. But spin the wheel and come up thirty-nine times or more, and Nature cleans the table in life’s bet-you lose.
It gets worse. In a kind of bizarre formula that is both precise and unforgiving, geneticists can now determine with near precision exactly when you will get the disease. We may now learn things we don’t want to know. Get fifty repetitions and at age twenty-seven you will grow unsteady on your feet, begin to lose your intellectual abilities, be confronted by uncontrollable palsy of your limbs and slowly lose your mind. In Penny’s case she has more than seventy repetitions.
Until recently, all this, who got Huntington’s disease and who escaped, had been viewed as some unfathomable mystery, an accident of fate. Now we know what causes the problem, but we can’t fix it. Perhaps ignorance is bliss.
The Boyds are now faced with the question of whether it is better to live in ignorance or to have the other children tested. So far, they have declined to run the tests.
This afternoon, I greet Penny with a smile and touch her cheek. She doesn’t recognize me. Sitting on her mother’s lap, gangly legs, her feet dragging on the carpeted floor of the living room, she puts one finger in her mouth. A string of saliva quickly forms between finger and tongue. The girl seems mesmerized by this. She now has the mental abilities of a four-year-old, her growing body belying the regression of her brain.
I have only known Doris Boyd for about a year, and in that time she has aged a decade. A manager for a temporary personnel firm, she no longer goes to work, uncertain how much time she has left with her middle daughter, or for that matter any of her children. This is now taking a toll on her marriage.
“Is Frank home?”
She shakes her head. “He comes home later every night. Can you blame him?”
I have come to pick up my daughter, Sarah, who is working on a school project with Jennifer, the Boyds’ oldest child. We talk a little, pass the time of day, avoid the obvious: the dying child in her lap.
She asks me how the case is going. For the parents of most of Sarah’s friends, what I do for a living is a novelty. The appearance of my name in the local paper on occasion in association with someone charged in a murder case has given me an unwonted notoriety. She has watched the news on TV. Doris Boyd has a personal interest in the outcome. Strangely enough, she is how I met David Crone.
“We have good days and bad days. Sort of like Penny,” I tell her. This she understands. “Ask me in a week.”
“They don’t make it look good on television,” she says.
“I’ve seen some of the coverage,” I tell her. I’ve also grown weary of seeing the same worn images in other cases, some lawyer in a crowded corridor with a microphone stuck up his nose telling the world that when the evidence comes in, his client will be exonerated, acquitted. They always use the same words. “I have every confidence.” The same tired denials broadcast to an increasingly cynical public, followed by the same shopworn analysis from media types whose idea of gathering news is to hang out on the courthouse steps with boom mikes and cameras waiting for a public confession. One day, some freaked-out lawyer will blow his fuse and tell them-“My fucking client did it. So what?”
Fortunately for us, the judge has seen fit to bar cameras from the courtroom. Even so, the trial is a growing media circus. The press has dubbed it the “Jigsaw Jane Trial,” a tag line placed on the case by the gallows humor of the coroner’s people before they identified the victim from her body parts.
The city’s leading television station, a local network affiliate, airs the same image every night, projected on a blue screen over the shoulder of their anchor: a rip-off of the fifties jacket cover from Anatomy of a Murder. This shows an anatomical stick figure with disconnected body parts with jagged cuts and splotches of blood. Give them any story and they can come up with a logo in twenty seconds.
Crone’s trial leads the six-o’clock news every night unless there is a mass killing, a nuclear meltdown or some other carnage that can be quickly packaged and labeled. It invariably opens with the same words: “And today in the Jigsaw Jane murder case of Dr. David Crone. .” Whether he realizes it or not, and regardless of the trial’s outcome, Crone will wear this scarlet letter for life. If he is convicted, he will no doubt become the “Jigsaw Jane Killer.”
“I suppose they have to do something to keep people watching,” says Doris. Her interest is more than casual. There are fewer than fifty cases of juvenile-onset Huntington’s disease in the country. Because of that, there are no clinical tests to research cures for children. I could not believe this when they first told me. We were having coffee one night, and Frank Boyd explained the problems they were having.
They were worn to a nub, fighting with insurance companies and creditors. Trying to pay mounting medical bills had become a battle of attrition, and they were losing. Their only real hope was to enroll Penny in new clinical trials that held the prospect, no matter how remote, of a cure. Trials were planned at the university medical center. Battles were ongoing for funding, federal and private money. But even if they got the money, these programs were not available to Penny Boyd. She didn’t fit the protocol. She was too young. The studies were only taking patients between the ages of thirty-six and fifty-six.
We spend our lives pursuing aspirations, career, family, money, always postponing those silent promises to ourselves that someday we will make a difference, we will reach out and get involved, lend a hand simply because it is the right thing to do. That evening, something spurred me to action, something I do not normally do. I am not by nature altruistic, but the Boyds were drowning.
The next day I stepped into a world I didn’t understand, one that was populated by physicians and laboratory technicians, most of whom turned a deaf ear if not a hardened heart as soon as they read the title on my business card: Attorney at Law. This conjured up things they did not want to think about: the perennial enemy of all in the healing arts, the bloodsucking lawyer.
They were not anxious to help, or even to talk. I got enough doors slammed in my face to become an expert on hinges and knobs. I was the pariah. I started leaving my briefcase at home, wearing polo shirts and slacks instead of a suit, just to get through the door. Several times I was mistaken for a patient, and owned up to the truth only after they produced a sharp needle and were getting ready to draw blood. I would have gone all the way, but I knew that as soon as the little glass vial turned blue, the jig would be up-lawyer’s type O. I could be transfused only with the blood of a shark.
As I was being led out, I always offered the same spiel, that I wasn’t suing anybody, just trying to get help for a sick child, while I left claw marks on the frame of their door. This went on for weeks. It included letter writing and phone calls to state lawmakers, one of whom was an old friend, a member of the Senate Health Committee. He finally put me in touch with some hospital administrators, and after eating my way up the food chain I found myself in the office of Doctor David Crone.