A few years ago, I was stopped on my way out of the house, four kids in tow, by a ringing telephone. Normally I would have let the machine catch the call, but my hand happened to be right on the phone when it rang. A stranger’s voice with an accent asked to speak to me, and I identified myself a little impatiently. “I am Prisco Ramirez,” said the stranger. “We just moved to Fresno, and I found you from your Newsweek article. My daughter has FOP.”
I put my purse down and told five-year-old Isabel to close the door. The Newsweek piece from 1999 was the one I wrote to raise awareness about FOP, the rare genetic disorder that turns muscle to bone and affects my son Vincent. The piece had elicited kind cards from people around the country and messages from alternative health practitioners, and we employed it for fund-raising, but no response as singular as this: If the odds of FOP hitting an individual’s genetic code are one in two million, then the odds against two people with FOP living in the same valley town have to be even more astronomical.
Suddenly, Prisco Ramirez was no stranger. The details of his family’s life might differ from mine, but I could recite his sorrows by heart: a child healthy at birth, a perfectly normal life, until one morning–a persistent pain, a mysterious swelling. A quest for a diagnosis. A quest for a cure. And in between, countless hours of helplessness, the suffering of seeing your child lose the ability to put on shoes and ride a bike.
Prisco told me his family had just arrived and was from the Philippines. I learned that his daughter Charis would start college, and that the family, as yet, had no doctor, no health insurance, and none of the medications we use to try to slow down FOP. Charis had just started having to sit after walking a few steps. She had had a fall, and, of course, I knew what that meant. [FOP can accelerate with trauma.]
I went to visit the Ramirez family. Prisco and his wife, Babette, both nurses with green cards for work in California, lived with their four children in an apartment off a well-transited avenue not far from the freeway. I wasn’t prepared for the strong emotion that took me the moment I entered the little apartment and saw Charis Ramirez. In this lovely young Filipina I saw my own son so patently, tears stung my eyes. Her rigid upper body, her delicate shoulders and stiff neck told me she shared the same personal history of loss and pain as my son. And she had the same sweet clarity in her eyes, the same dignified bearing in her difficult gait. And when I met Babette, I saw myself.
After we embraced, Babette offered a Kleenex box, and we both wadded white tissues in our hands as we talked on the metal folding chairs of the little living room, for which Babette apologized unnecessarily.
“Charis has your picture!” Babette remembered. She shuffled through a stack of papers on a tiny table and produced a photo–in the center of a page torn directly from the July 12, 1999 Newsweek–of Vincent and me at Children’s. “A friend sent it to us when we were living in the Middle East,” said Babette. “When we came to California, Charis said, ‘Maybe we can meet them!'”
The thought of the family studying and saving our story on the other side of the world, finding themselves a few years later living in our town and hoping to meet us, made me reach for another tissue. “We found your name in the phone book,” said Babette simply.
Babette then traced a long livid scar down her daughter’s left leg. “From the surgeries,” she told me. Like so many FOP children misdiagnosed with cancerous tumors, Charis had withstood early treatments that did nothing but accelerate the furious bone formation.
Pressed for time, I hurried to give the Ramirez family the names of doctors and medications: I explained the experimental use of thalidomide, about the capsules with the silhouette of a pregnant woman with a circle and slash. We talked about hot pools and herbs and prednisone and prayer.
Without being able to say everything that needed to be said–even with all the time in the world–I looked down at my watch and rose to hug the family abruptly, late to collect my kids, remembering the words of my son’s beloved FOP specialist at Penn, Dr. Fred Kaplan: FOP is a hell of a way to make friends. And though in the buzz and din of daily life I have not had as much contact with the Ramirez family as one might expect, I know in my bones that our solidarity transcends all the usual formulas of friendship.
This story appeared in slightly different form in Mindprints: A Literary Journal.