Carol Zapata-Whelan
Fresno, California, United States

“… I guess [the grass] is the handkerchief of the Lord,
A scented gift and remembrancer designedly dropt,
Bearing the owner’s name someway in the corners, that we may see and remark, and say Whose?”
—Walt Whitman, Leaves of Grass

I sank down in a padded chair to wait for my routine bone density scan. Before I could open my laptop to a Fall 2024 syllabus, a voice asked me in Spanish: “Profesora, is that you?”

A few seats over was a young woman with cinnamon colored hair, in a summer shift.

“I’m Ana Rodriguez,” she said amiably.

Life had taken too many sharp turns, too much had changed, including me, since I’d last seen my former student. So I wasn’t placing Ana Rodríguez’s face in any one class or year.

My vague smile must have said this.

“My cousin in Mexico has FOP,” she prompted.

Oh!

It was like getting shaken awake and shoved into the past, all at once.

---

December 2017, the last day of a Spanish literature class. I was sharing what I usually shared with my students, all Dreamers: the hope-giving story of my son Vincent, world’s first MD with fibrodysplasia ossificans progressiva (FOP), a rare disorder that turns muscle to bone.

“No desistan,” I said. Persevere. Have faith.

I raced against time to raise FOP awareness and support for research at the University of Pennsylvania, founded by our patron saint, Dr. Fred Kaplan. His International FOP Research Consortium discovered the FOP gene in 2006, boosting the odds of finding a cure.

I would tell anyone who would listen that FOP can strike out of the blue in childhood. For my son it began with a mysterious limp when he was eight years old. FOP can also be triggered by trauma as mild as a bump or an injection. It causes tumor-like swellings that rise, fall and vanish. It can lead to permanent toss of mobility in a joint over time or overnight. FOP’s defining feature—usually overlooked—is a large toe missing a joint.

That last day of class in 2017, I shared with students that my son graduated from a UC medical school, returned for residency in “our” hospital, Valley Children’s, and later worked in Stanford’s pediatric Bone Marrow Transplant Unit. He had received an out-of-state pediatric oncology fellowship, all possible thanks to a study drug managing FOP, unimaginable before Dr. Kaplan adopted our former “orphan disease.”

After class, a student, Ana Rodriguez, approached me, animated.

“I have a cousin who has what your son has,” she said, as I packed up my laptop.

This was wildly improbable. I would have to explain why, as I had many times before.

“It’s like winning the lottery,” I said. “Chances of having FOP are one in 2.25 million.”

“My cousin in Mexico has fibrodisplasia osificante progresiva.” No one said these syllables so well in Spanish or English unless they knew someone with FOP.

I set down my laptop.

“My cousin, Manuel, lives in a small village,” Ana told me. “He can’t climb on the bus to his college because his knees are locked.”

A doctor in a city had made the FOP diagnosis.

“He rides hours in a friend’s taxi until his friend can drive him to school,” Ana went on.

Manuel had no specialists, no medications, no adaptive tools.

“Their village doesn’t have internet.” Ana’s eyes were pained.

That day Dr. Kaplan gave me the name of a specialist in Mexico City, Dr. Alberto Hidalgo. Dr Hidalgo agreed to see Manuel. He connected the family to an FOP support group in Mexico and to the International FOP Association, a source of grants and crucial networks.

Soon after, my son Vincent had a drug trial follow-up visit at UCSF. By then, Manuel’s family and Dr. Hidalgo had made contact with our UCSF specialist, Dr. Ed Hsiao, who, like Dr. Kaplan, devotes his life’s work to FOP patients. In between Vincent’s imaging appointments and blood draws, we talked to Dr. Hsiao about immigration documents and steps Miguel would need to take to enroll in the study, assuming eligibility.

Elated, I envisioned Manuel’s future opening wide, as it had for my son.

Our exam room that day had a floor to ceiling window. I looked out on the blue jewel of the San Francisco Bay and the Golden Gate Bridge with its sunrise hues, soaring like hope.

---

“Yes, your cousin Manuel!” I said to my student as we sat in a waiting room worlds away from an FOP drug study. “How did his trial go at UCSF?”

My student’s face was unreadable.

How long had it been? I tried to calculate.

“He never went,” Ana said, her voice light.

When we had last talked, everything was lining up.

It couldn’t be.

“My aunt and cousin got their passports and immigration documents,” said Ana. “Our family vouched for them to stay with us in California for the treatment. But it didn’t happen.”

I still didn’t understand. Were we speaking the same language? Spanish?

“The study never called,” Ana said evenly. No one knew why.

Dr. Hsiao and his researchers at UCSF led a rigorous university drug trial and cared deeply about patients. They would have reached out to Miguel’s family—to set dates or explain ineligibility. Across countries, cultures, FOP and a pandemic, something had gotten lost in translation.

“Why didn’t you contact me?” I looked back at Ana, bewildered.

How long had it been?

Nearly seven years, I realized.

How could I not have reached out in that span?

At that moment, Ana’s mother, Carmen, an ebullient version of her daughter, returned to the waiting room. She was also in the dark on the UCSF study. She thanked me for my help in 2017.

Such as it was.

 “I asked about you now and then,” Carmen said. “Ana told me you both lost touch.” Her tone held no accusation.

I asked if Manuel still saw his specialist.

“One doctor disappeared.” Carmen shook her head. “It’s so painful to see my nephew with this disease.”

FOP had had seven years to progress.

In that moment it occurred to me that all I had “done”: my articles on life with FOP, my missives to MD’s, my speeches to Dreamers; all of it was work “writ in water” as the poet John Keats lamented his legacy.

“I emailed you, profesora,” Ana said quietly. “But…we didn’t want to impose, after your son had his surgery.”

---

January 2018: The one day it rained in LA, my son made a misstep while visiting a good friend, an ER MD. A catastrophic fall, a fractured femur, a medical flight to UCSF for FOP trained anesthesiologists. Vincent was the first FOP patient to have major surgery while on our first study drug.

The best doctors in the world and a promising study drug proved no match for FOP’s nuclear chain reaction to major trauma. Over the course of two years, FOP relentlessly attacked, robbing my son of mobility along his 6’1” frame. FOP also foreclosed on his pediatric oncology fellowship, on his dream of working in hospitals healing very ill children.

My son’s brown eyes lost their light for a while. He retreated. He railed. But he eventually rallied and regrouped, in fortitude, in faith. He ordered adaptive tools. He solved loss of ability with technology. Today he saves lives via telemedicine, in his home office, where my husband, Walt, installed lights, windows, doors that magically respond to our son’s voice.

I have done my best to catch up to my heroic son, to bind a fracture in my spirit: I’ve (mostly) stopped asking, “What if it hadn’t rained that day in LA?” or “Why my son, Lord?”

---

When they called my name in the waiting room, I was too flustered to ask Ana for cell numbers. But I desperately needed to talk to Manuel’s family in Mexico, to learn what had gone wrong, to apologize. I decided the fastest way to do this would be to track down the specialist in Mexico City, praying he had not disappeared, hoping he remembered me.

Because he would not be at liberty to explain why Manuel never enrolled in the UCSF trial, I did not ask. I requested, instead, that Dr. Hidalgo relay my number to Manuel’s family.

Dr. Hidalgo responded warmly, within hours.

The next morning, I had a WhatsApp call from Dolores, Manuel’s mother. We talked about our sons. We lamented the missed drug trial. Dolores never learned what halted our plans. My guess was that by the time immigration documents arrived, the trial had concluded. If the family wished, I would inquire. But seven years later, it was moot.

The stars had misaligned.

Yet the stars aligned mysteriously that very week. I learned that Manuel and his mother had just made a trek to Mexico City. They had been in Dr. Hidalgo’s office on the very day I reached out.

And then: a bonafide miracle: Manuel had just begun a new study drug in a trial launched by Dr. Kaplan’s International FOP Research Consortium—approved in Mexico.

---

I met Manuel, for the first time, on WhatsApp. He was hopeful and grateful to start a promising drug trial for FOP. His voice conveyed the deep peace my own son imparts. I swallowed tears as we talked.

“We’ll pray for Vincent and all your family,” Dolores promised.

---

One day in August 2024, as I awaited a routine scan for a common bone disorder, osteoporosis, I learned by chance that my efforts—years ago—to help a boy with a rare bone disorder, FOP, had come to naught.

Yet, serendipitously, that same week, I also discovered that this young man, Manuel, had newly begun his first FOP drug trial. With seven more years of research behind this trial, the odds are good, I believe, that Manuel’s study drug will surpass the one he never took, the one that in 2018 could not, ultimately, halt FOP for my son.

Today, it is Manuel’s turn to lend courage to us as he joins an international scientific effort to treat—and God willing, to cure—fibrodysplasia ossificans progressiva.

Today, as in 2017, I once again see the blue jewel of the Bay and the Golden Gate in its sunrise hues, soaring like hope.

“In the designs of Providence,” said Pope Saint John Paul II, “there is no such thing as coincidence.” My chance meeting with a student I had not seen since before FOP and a pandemic derailed lives was no coincidence. I believe it was a call to understand that to have one’s work in good faith as “writ in water” does not signify vain effort, but instead a signing on to the unseen currents of Providence that shape and are shaped by our lives.    

Note

Names of friends are changed.