A researcher and a pilot, Crystal Kaya watches life come apart when her son gets sick, leaves her career to become his full-time caretaker and discovers that the skills that once kept a plane in the air are the same ones that keep a family aloft through a crisis.
Crystal is Director of Data and AI at Mission: Cure, a nonprofit working to accelerate treatments for pancreatitis. Before that she spent years as a UX researcher at Amazon and Microsoft and researched patient experience at Humana. She is a licensed pilot, NASA/JPL Solar System Ambassador, a Vetter for the TESS Single Transit Planet Candidate (TSTPC) Working Group, and President of the Seattle Astronomical Society. She lives in Seattle with her husband and son.
Story Transcript
Crystal Kaya transcript
I earn my pilot's license in my early 20s, and on the morning of my flight exam, a cylinder detached from the engine and I had to put the plane down in a soybean field short of the runway. I walked away from it, found another plane I could borrow, and passed my exam the same day. My dad, who was a pilot, used to say that in an emergency, a good pilot doesn't have time to panic because they're too busy flying the plane. I carried that into everything. I grew a career. I love doing research across aviation, healthcare, and finally at Amazon, where my career flourished and I was heading towards leading part of the research organization. I had worked hard and built the life I'd been planning since I was young, and in the middle of that life was a little boy.
My son, Atlas, has a massive Lego city that takes up an entire room of our house. He's been building it for years. And if you come over, he'll walk you through it street by street and tell you who lives where. Because every one of those figures has a name and a story. He's 11. He's funny in a way that catches you off guard. He loves superheroes and tennis, and he asked me questions I can't answer and challenges me in ways I never thought a child could. He was two the first time we knew something was wrong. We were visiting his grandfather and in the middle of the night we woke to him screaming.
There was no fever, no rash, nothing that pointed to a cause. His face was deep red and his eyes squeezed shut. His little body tensed under his mint green car pyjamas. Eventually, he fell asleep in our arms on the couch. When I called his paediatrician the next morning, the nurse wasn't concerned.
“Probably gas”, she said. Maybe constipation. After that, it was his belly all the time. Every time he ate, he'd purse his little lips and crinkle his nose and tell me it hurt. And for two years I was told it was picky eating phases or dehydration or stress. And because we were first time parents, I put aside the feeling that something just wasn't right and I trusted the doctors. Then one afternoon, I was at work and it was his paediatrician on the phone instead of a nurse. It's never good news when the doctor calls with results. I paced that hallway, staring at the imperfections in the concrete floor while he explained that Atlas's pancreas wasn't working and his enzyme levels were hundreds of times above normal. He said, I know it's your job to worry, but don't be scared. My dad had died unexpectedly a few weeks before and I was still in pieces from losing him. I hung up, stared out the window at the end of the hall, and I could feel in my bones that something like a storm front was moving in over our lives.
Six months later, Atlas was diagnosed with chronic pancreatitis, his pancreas already permanently damaged by attacks nobody had caught. There is no cure. I heard those words over a speakerphone alone in the car during the Covid 19 lockdown. I muted the phone and cried. Having a name for it didn't make anything easier. It only started the clock to the need for a solution. And we were driving back and forth between Seattle, Washington and Stanford in California for Atlas appointments and procedures. And I remember trying to finish a word document from the passenger seat on a phone hotspot while a conference call cut in and out, asking myself what in the heck I was doing. That year, my performance review said exceeds expectations on everything except for one little note at the bottom that expressed concerns about my long term leadership potential because of my absences. It stung. It wasn't a failure of my effort. It was an incompatibility between my child's life and the demands of the job. So I resigned from Amazon and moved to Microsoft, still believing I could have it all with enough effort. And a year later, I resigned from Microsoft to my first day out of work. I thought about how disappointed 15 year old me would have been, but 35 year old me was not 15 year old me. And I reminded myself that I had traded a career for time. Time to be there with Atlas and time to help solve this problem.
But his disease was moving faster than science was. An acute pancreatitis attack is the kind of pain that lands. A child in a hospital bed curled on his side, IV fluids running through his veins to keep the worst complications at bay, while his own digestive enzymes eat the organ that made them. The attacks came 3 or 4 times a year. Than every month, than every week. The parenting books don't prepare you for how to hold your child down, how to whisper in soothing voices while ten vials of blood come out of his little arm or IV needles are inserted. It's a special kind of horror, and I've done it more times than I can count. Atlas tumbled off the growth chart. Eventually, his bone scans came back abnormal because a body that can't absorb nutrients, can't build bone, and can't grow. Finally, his team told us we had come to the end of all available conservative options and referred us to a surgeon. The day we met the surgeon, he turned his monitor so we could see a diagram, and Atlas sat up on the exam table with a tablet propped on his knees, pretending not to listen, but I could see the occasional tear trickle down his cheeks. The surgery is called TPIAT. They removed the pancreas, the spleen, the gallbladder, the appendix part of the duodenum. Rebuild the digestive tract and infuse insulin producing cells into the liver. This surgery takes 12 to 17 hours.
I researched the outcomes from the surgery and the data was scarily limited. I had more to go off when I bought my last toaster. Every number I asked about came back the same way. We don't know yet. Not enough children have had it for years. This system had patched my son back together every time he came apart. Our little Humpty Dumpty. And now all the king's horses and all the king's men were telling us soon there would be no more putting him back together again. I wasn't at willing to accept that that was the only answer. So I did the only thing I've ever known how to do with a problem. I quit my job and joined Mission Cure, the only non-profit focused solely on a cure for chronic pancreatitis, and I took everything I sharpened over 20 years the research, training, the data work, the refusal to believe a problem was unsolvable and pointed all of it at pancreatitis. We were told about a drug with a real mechanistic rationale for Atlas that cost $300,000 here in the US, but with some digging, we found it much cheaper in Argentina. And that became late night FaceTime calls and WhatsApp messages, and a network of friends and colleagues and strangers who made it possible for Atlas to take that drug, a tiny blue pill that looked like hope. I cried the first time he took it. We built him an N of one trial and found a biotech willing to grow organoids from his cells so repurposed drugs could be tested against his own biology.
I wasn't willing to let him face that surgery without exhausting every option first, even if it meant going to the literal ends of the earth to find them. Then, in early ‘26. His doctor explained that once again, Atlas’ minor papilla, a small opening for the accessory pancreatic duct, was so tight he could barely get an instrument through it. I took my husband's hand. We walked out to the hospital garden and sat down and I said out loud the thing we'd been bumping up against for six years. The minor papilla has always been a problem. There are no long term stent options, so even if we find a drug that stops the enzymes eating away at his pancreas, there is no drug that fixes the minor papilla. I have a quote from captain Jean-Luc Picard in Star Trek that hangs over my desk at home. It is possible to make no mistake and still lose. That is not a weakness. That is life. The reality is, I have given everything I have to solving this problem and we may still lose. The work I'm doing right now will most likely benefit another mother's child before it benefits my own, and not because anyone failed and not because effort wasn't enough, but because the system we have was never designed to move at the speed a child's disease moves. So how do you keep going when that's the honest math? When Atlas is in the hospital? I go down to the chapel and I read the notes.
People leave on the compassion wall and the word on almost every one of them is hope. Hope, though, has no instruction in it on its own. It fits well with waiting. But trust is different. Trust carries confidence and a process, a person, a thing. Trust survives its own disappointment. The day my engine quit all those years ago, I didn't hope things would work out. I trusted my training and I kept flying the plane. So I don't hope someone cures chronic pancreatitis. I trust that human minds relentlessly solving a problem tend in time to succeed. It stops being a question of whether there's a point in staying in the fight. You don't ask how it's going to turn out. You just keep flying the plane. The hard variable here is time. And time. To wait on a solution is the one thing my son does not have enough of. So I'm not here to ask you to hope with me. What I want is for every researcher, every drug developer, every person with the skills or the resources to help move this forward. To feel the same fire in their belly that I feel. To trust that this work is worth doing without exception. Because whether this is solvable was never the question. Whether it gets solved in time, is. What Atlas’ future looks, like depends on it.