Why We Built MediXo
Built from lived experience in rare disease, complex care, and loss.
MediXo was not created in response to market opportunity. It was built inside the daily reality of rare disease, long diagnostic paths, medication overload, and the constant negotiation between survival and living. This system exists because the ones we relied on failed us — repeatedly.
I first knew something was wrong in 2011. I had just earned my black belt after months of intense training, but during the final stretch something felt off. My legs were heavy. I struggled to remember combinations I had practiced for years. Instead of getting stronger, I was losing ground. I could feel it, even if I couldn’t explain it.
In May of 2012, that unease became impossible to ignore. On an extremely hot day at work, my vision began to fail. I covered one eye, then the other, and realized I could barely see out of my left eye. That loss never returned. Today, I see only the second line on an eye chart in that eye. I wear glasses with a blank lens on the left side — not to correct vision, but to protect what remains.
What followed was a three‑year path to diagnosis marked by confusion, disbelief, and decline. I grew weaker. My heart became involved. Specialists disagreed. Some dismissed what I was experiencing altogether. Even world‑class institutions missed it. It wasn’t until a pulmonologist at a Boston hospital asked a simple question — whether I had been evaluated for mitochondrial disease — that we finally had a direction. We couldn’t even pronounce it at the time.
I was diagnosed with mitochondrial disease in December of 2014.
Mitochondrial disease is complex, variable, and often misunderstood. No two people present the same. It predominantly affects children, but adult‑onset cases are increasingly recognized. Because mitochondria exist in every cell, the disease can affect any organ system — muscles, heart, brain, vision, cognition. Living with it means living with uncertainty. There is no cure. Symptoms are managed as systems fail, one by one, over time.
For me, that has meant progressive muscle weakness, cardiac involvement, diabetes, cognitive impairment, and neurological events. After undergoing an aortic valve replacement at age fifty‑two, plaque broke loose days later and traveled to my brain. I suffered three strokes in a single day. The headache was unlike anything I had ever experienced. My vision fractured. Walking through a doorway felt like choosing between three overlapping realities.
Years later, another neurological event left me unable to perform simple tasks. I tried to place a water bottle cap on the side of the bottle, then upside down on top of it. I couldn’t follow conversation. I couldn’t remember anything. I now take medication to support memory and cognition.
More recently, a viral illness triggered another cardiac event. At the same time, an aortic aneurysm was discovered — not yet critical, but something that will require lifelong monitoring. This is the nature of mitochondrial disease. One moment you feel stable. The next, something hidden surfaces, and everything changes.
Managing this reality requires constant vigilance. I take roughly twenty‑five medications a day — for heart health, blood pressure, diabetes, cholesterol, cognition, and more. Some are taken multiple times daily. Each month, Judi and I sort thirty‑one days of medication into a stadium‑style organizer with four dosing windows per day: morning, noon, evening, bedtime. It is meticulous work. One missed dose, one error, one moment of fatigue can have serious consequences.
My care team includes a mitochondrial disease specialist, a cardiologist, a primary care physician, and additional specialists as needed. Coordination between them is critical — and often lacking. Systems break down when communication fails between hospitals, clinicians, patients, and caregivers. The burden of coordination falls on the patient and family. It always has.
The cognitive load of managing complex care is difficult to describe, especially when cognition itself is impaired. Tasks that once felt simple become overwhelming. Stress compounds symptoms. Fatigue limits capacity. You learn quickly that you cannot do this alone.
Judi’s role has evolved alongside my illness. As my health takes a hit, so does she. She manages appointments, medications, hospital visits, insurance, and bills. She ensures doctors explain things in language we both understand. She is the second set of ears and eyes in every room. Caregiving is deeply underestimated and misunderstood. It requires patience, resilience, and a kind of strength that rarely gets acknowledged.
Our relationship has grown stronger through this, but it has not been easy. We built a nonprofit together years ago called Hugs for Mito, raising funds to support mitochondrial disease research. That chapter eventually closed, but the work — and the need — never did.
Illness does not exist in isolation. My brother Kenny passed away four years ago at age fifty‑four. He was one of the kindest people you could ever meet. He lived with severe illness — kidney disease, sarcoidosis, bipolar depression, diabetes — and experienced many of the same systemic failures I did. In the end, he lost his vision. Watching someone you love suffer through a fragmented system forces you to confront your own mortality. You begin to ask hard questions about what you will leave behind, and whether the next crisis will be the one that takes you.
My son Andrew has seen me at my worst — mobility scooters, walkers, canes, moments when I needed help just to move. That is not what any parent wants their child to witness. Family illness reshapes everyone it touches. It becomes a shared burden, whether acknowledged or not.
MediXo was born from this reality. Not from ambition, but from necessity. The existing solutions were not good enough — not for patients like me, not for caregivers like Judi, not for families navigating long‑term, complex care. Pill organizers, apps, and devices were built for simplicity, not survival. They failed to account for human variability, cognitive load, and the consequences of failure.
I realized years ago that care systems could be better — safer, clearer, more dignified. I wanted tools that worked in the real world. Tools that anticipated failure instead of punishing it. Tools that respected the intelligence and exhaustion of the people using them.
I am living the consequences of system failure — and I am still here. Every day matters. I have a lot of life left to live, and I intend to live it fully. MediXo exists to make that possible for others. To help people manage complexity with confidence. To keep families out of crisis and, when possible, out of institutional care. To give patients and caregivers real tools — not promises.
We build for people who live this reality. For those who feel unseen. For those who know that dignity in care is not optional. We listen first. We build deliberately. And we never forget why this system had to exist.