I was born in 1977 on an Air Force base in Oklahoma—one of four babies diagnosed with bladder exstrophy that same week. Back then, no one knew what that meant, and certainly not how to treat it. Thankfully, my parents found their way to Rainbow Babies and Children’s Hospital in Cleveland, Ohio. That journey saved my life.

Like many exstrophy patients, I also had epispadias and pelvic separation. The doctors did what they could to keep me alive, and—thank God—they didn’t make things worse. They got me to Rainbow Babies and Children’s Hospital in Cleveland. My parents were twenty years old and terrified. Instead of celebrating their first child, they were grieving the future they thought we’d have. But time has a funny way of working things out. And we were exactly where we needed to be.

I had multiple surgeries as an infant, and though some were successful—including the initial bladder closure—others, like bladder neck reconstruction, didn’t work as hoped. I wore diapers until age ten and tried various urostomy setups, but I hated them. They made it nearly impossible to play sports or be active like other kids. Diapers, though inconvenient, gave me more freedom.

Eventually, I was introduced to Dr. Robert Kay. A remarkable man. He treated me like I was his only patient and guided my father through the darkest times. When he moved to the Cleveland Clinic, we followed him. I’ll never forget when he said, “Georgie, I think we found a solution—no more bags, no more diapers.”

The plan was to reroute my ureters to my bowel. I was only ten, and the decision rested mostly with my dad, but I always felt included. After the procedure, everything that came out of me was liquid. It was a strange adjustment. The upside? I could play sports again—basketball, baseball, swimming, wrestling. I could just be a kid. The downside? Blowouts. With everything passing through the same exit, accidents happened. A disciplined diet and routine helped, but let’s be honest—what ten-year-old is great at routines?

School was rough. Kids can be cruel, even when they don’t mean to be. Their words cut deeper than any scalpel. I wish I could go back and tell that boy it was going to be okay. That he’d thrive. That the trials and tribulations he would endure would create the foundation of the man he would become. But at the time, it felt lonely and overwhelming.

At 17, I was hit with another blow—colon cancer. My diversion had served me well for a decade, but the exposure of my intestines to urine had led to dangerous polyps. I was active, happy, and doing well in school—I’d even earned a full scholarship to study Music Therapy at Cleveland State. But now we were at a crossroads.

Dr. Kay asked, “Georgie, do you have one last surgery in ya?” I didn’t want to do it—but I knew it was time. Unfortunately, Dr. Kay wouldn’t be the one to operate. “I’m getting too old,” he said. ““Georgie, you’re just too big.  My back would not hold up during the surgery.” The scariest part was that my doctor, the single most important influence in my life other than my father, would not be performing my surgery. 

Enter Dr. Jonathan Ross—young, confident, detailed. He didn’t have Dr. Kay’s warmth, but he had skill and clarity. I trusted him. On Christmas of 1994, I received my Indiana Pouch. It holds 1500ccs of urine—triple the capacity of a normal bladder. My hospital stay was long, but the results changed my life. No more diapers. No more worry. I’m here because of the extraordinary care of Drs. Kay and Ross and countless incredible nurses.

After that, the story becomes less about exstrophy and more about me as a man.

I’ve been married to my high school sweetheart for 23 incredible years. She’s my everything. I thank God every day that she stood by me, even through the hardest moments. We have four amazing kids: George, 20, a brilliant mind at Michigan State; Madison, 18, a strong, sarcastic, and nurturing nursing student at Illinois Wesleyan; Raegan, 14, our gentle soul and mother hen; and Pierce, 12, the kind and fearless heartbeat of our family.

I’ve worked for the same company for over 25 years and now serve as a Regional Manager. I also love sports, cigars, politics, and scotch. Not necessarily in that order. I’m proud of the life I’ve built.

Bladder exstrophy is a part of me, but it doesn’t define me. It’s something that happened—something I lived through, not something I live in. And now, I’m eager to give back to this incredible community. Together, we can do great things.