From Fiction to Reality: Why Erin’s Research Focus Could Never Be Random
In Book One and Book Two, Erin and Akiko are researching a disease called Lymphangioleiomyomatosis or LAM. You might not have heard of it before, and that’s part of why I wanted to share my own connection.
LAM is a rare, progressive lung disease that primarily affects women. It causes abnormal growth of smooth muscle-like cells in the lungs and other organs, forming cysts that impair breathing. It can also lead to conditions like pneumothorax (collapsed lung).
When I decided Erin was going to be a medical researcher, there was never any question that his work would focus on LAM. But it wasn’t a random choice. Like Erin, I have a deeply personal connection to the disease, which is why it felt right to highlight its toll.
I was two or three years old when my mother first began experiencing shortness of breath and coughing up blood. After countless tests and doctor’s visits, she was finally diagnosed with LAM. At that point in the early nineties, fewer than ten women in Australia had ever been diagnosed. Today, the number is closer to 300. It may not sound large, but the impact is devastating.
Back then, her doctors were blunt. Rare diseases rarely received research funding. Without research, there was little hope of effective treatment, and no hope of a cure. They told her there was nothing they could do. Her prognosis was “six months to twelve years.” (Which, let’s be honest, is about as useless as prognoses get.)
That shaped my family’s life in countless ways. Many of the moments you’ll see Erin grappling with in Book Three—his mother’s illness, and his desperation to make his research matter—are drawn straight from those experiences.
As a side note, my mother’s prognosis was not as bleak as it sounded back then. Over the years, a small number of specialists in Australia have dedicated themselves to LAM, and their tireless work has meant people like my mum now have access to treatments that help them manage the disease and enjoy more of their lives.
And yes—my mother is still alive. She’s now moving toward the later stages of her illness, with a double lung transplant as the only remaining option to extend her life. But in the meantime, she’s making the most of it: traveling, creating, and turning her farm into a place filled with animals and art.
I never followed the path of medicine myself (a traumatic mouse dissection in senior biology firmly ended that dream, much to my teachers’ disappointment). But I hold enormous admiration for the real researchers who dedicate their lives to understanding diseases like LAM. They’re the ones doing the work Erin only talks about.
That ongoing fight for time and quality of life is the thread I wanted to reflect through Erin’s research and his story arc. His fictional journey isn’t just about science—it’s about the very real weight of hope, uncertainty, and persistence that patients and families live with every day.
If you’d like to learn more or support research into LAM, these organisations are a good starting point:
Awareness matters. Even rare diseases deserve a spotlight.