More Than You Can Handle: A Rare Disease, A Family in Crisis, and the Cutting-Edge Medicine That Cured the Incurable - Hardcover

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Miguel Sancho is an Emmy Award-winning television producer currently show-running and developing series and specials for A&E. For seven years he helped run the ABC primetime news magazine 20/20. Prior to that, he was an investigative producer at 20/20 and CBS News's 48 Hours. He lives in New York with his wife, Felicia Morton, and their two children, Lydia and Sebastian.

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Chapter 1
Please Fasten Your Seat Belts

Daddy: a touching term of endearment, an exalted job title, and presently-"Daddy!!"-a blaring distress signal.

The scene: Delta flight 6056, a claustrophobic regional jet as tight on legroom as food options, en route from LaGuardia to Raleigh-Durham, North Carolina. Me in seat 12C, splitting attention between the Sky magazine crossword and my seven-year-old daughter, Lydia, seated next to me and enraptured by the images on the laminated safety card. Two rows back and across the aisle, my wife, Felicia, and our three-year-old boy, Sebastian. The captain had just announced our impending descent in his best The Right Stuff voice of practiced professional calm. The Fasten Seat Belt sign was on.

"Daddy!!!!!"-my wife using my domestic moniker, her voice almost a Jamie Lee Curtis horror movie scream the second time. I whipped my head around, spilling a plastic cup of Diet Coke into my lap as I fumbled for some way to help. I turned just in time to witness a small fountain of vomit, the tapioca pudding variety, spewing from our son's discolored lips onto Felicia's blouse. My wife looked at me with her big brown eyes, silent, blinking back panic. Then she tilted her head down to the convulsing child prostrate in her lap, his head rolled back, lifeless. An economy class pietˆ.

"His head is burning up!" she announced to the cabin, just as he went into some kind of seizure or febrile spasm. I didn't know the difference, which made it all the worse.

There may be circumstances less hospitable to medical emergencies, but aside from some vivid memories of the aftermath of the 2010 Haiti earthquake, none came to mind as I remained strapped, seated, and upright, lifted my arm, and pressed the flight attendant call button-a profile in impotence.

Lydia, preternaturally serene, tugged my sleeve and pointed to the safety card's diagram of a water landing. "What if this happens?" she mused with wonder. I shut my eyes and conjured an image of Sully Sullenberger, mentally beseeching his avuncular, disembodied face for guidance. Waddya think, Sully? How would you handle this one?

The image pursed its mustachioed lips and shook its head.

Like any disaster movie, this trip had begun as an exercise in quotidian blandness. Booked on Expedia months in advance, it was conceived as the latest in a long series of medical tourism weekends for our family. Three and a half years prior, Sebastian had been diagnosed with CGD, an extremely rare, often lethal immune deficiency with which he'd been born. The diagnosis ripped through our lives, careers, and relationships like a twister through a Missouri trailer park, and we'd spent every day since in some degree of distress-sometimes quiet, often loud-as we struggled to keep him out of danger, out of the ICU, out of the grave. Vacations were one of several aspects of our lives that had been radically recolored. Now if we ventured outside our domestic safe zone, the destination was usually one of the country's top children's hospitals as we pursued an Arthurian quest for a cure.

That quest had led us to North Carolina. Today's itinerary included this Delta flight to Durham, a rented Dodge Caravan, and an appointment at Duke University Hospital for a meet and greet with the team at the Pediatric Blood and Marrow Transplant Unit, possibly the only people on earth who could rid Sebastian of his disease. The transplantation procedure is among the most grueling in modern medicine, so before we committed, the doctors wanted to walk us through the process, show us the facilities, run some preliminary diagnostic tests, and lay out a timetable for when we'd move down from our Westchester County home to begin a yearlong "journey"-the preferred euphemism for "ordeal." If we had time, over the weekend we'd explore local housing and school options. Simple enough.

Any travel plan involving a chronically ill kid is risky, but Sebastian had been doing so well the past few months Felicia and I summoned enough optimism to forgo travelers' insurance. I even had the audacity to snag two tickets to a Billy Joel show at Madison Square Garden earlier that week. Neither of us is a huge fan-to be frank I'd rather get a Brazilian wax than endure a performance of "We Didn't Start the Fire"-but this was a rare opportunity for us to have a proper date night and recapture some of our pre-kids, pre-diagnosis frisson.

Fate put those plans in the shredder. Five days before our scheduled departure Sebastian came down with a mysterious fever, accompanied by a nagging cough. For most parents of a kid that age, that's a plain-vanilla health issue. Just dose the kid with acetaminophen, crank up the bedroom humidifier, and wait three days for the clouds to part.

Not so with parents of the immunodeficient, who regard fever and cough much as ancient Roman diviners evaluated an abnormal sheep liver or a statue struck by lightning. Bad omens. The first sign of symptoms triggered a response routine that, while well practiced enough to be second nature, was still sufficiently stressful to make our innards do the lambada as we awaited an accurate diagnosis. Calls to the pediatrician, blood draws, cultures, chest X-rays. All the while that merciless cough, a periodic honk in the throat mixed with the hideous sound of mucus whipping around deep in the lungs, marked time through sleepless nights-the body's version of a smoke alarm's low-battery chirp.

The timing simply sucked. I was on the tail end of a labor-intensive project at work-I was a television news producer and late nights of kung pao chicken and 1 a.m. Uber pickups had become frequent enough to pass for a lifestyle. That week my extended obligations at the office meant stiffing Felicia with the lion's share of the parental responsibility. She'd cut back on her professional life as a PR consultant to become Sebastian's primary caregiver years ago, but despite her expertise a situation like this was tough to manage alone. An hour tending to a sick child passes like three hours of regular life; after four days the experience is a masonry grinder for the mind.

The fever oscillated between 102 and 104, but it never broke. A doctor at a nearby hospital eyeballed an X-ray, ruled out pneumonia, and decreed we had nothing but a run-of-the-mill virus on our hands. In theory we could manage that, but as the symptoms persisted, Felicia's customary suspicion of the local sawbones prompted a call down to the experts at Duke for advice. Should we proceed as planned with the trip or postpone until Sebastian was in better shape to travel?

"They didn't hesitate," she reported over the phone as I sat amid a pile of scripts on my office desk. "They said he needs to get down there right away. Whatever he's got, they can handle it best if he's there."

"And . . . "-indecision decelerating the pace of my speech-"what are you thinking?"

"We need to go. Something's not right. I know my child."

That last bit was code for "Don't question me," a declaration of steely resolve that, in this instance among many others, likely saved our son's life.

The next morning our plane was wheels up on schedule and it appeared fortune had granted us a respite. Sebastian's fever dipped to 101, not great but tolerable, and his affect was on the upswing as he peered out the window, digging the g-force of the takeoff. Rikers Island, then the Archie Bunker blocks of Queens and the rest of New York, receded behind gray cotton candy clouds. But somewhere over the Chesapeake Bay the shit hit the fan. Fever, barf, spasms, terror.

Our worst-case scenario was now, indeed, the case. It looked like our son was infected with an unknown pathogen against which he was defenseless, and it was spreading throughout his lungs. Most people don't give it much thought, but the biology of infection is as scary as it...