It's wild to think that this is our 5th year at Great Strides as Team Phillips, and what a difference a year can make!

This will be our first time walking as a family of three unless you count Caroline's 2024 Great Strides- Waddle Edition. It's been a long and bumpy road to get here. Still, my story of Cystic Fibrosis, chronic illness, and infertility are all intertwined and all too relatable for other CF families. 

If you're new to Team Phillips, we'd love to share our story with you: 

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Most people are diagnosed with CF in early childhood, but I was unexpectedly diagnosed as an adult after a series of hospital visits, fancy tests, and specialist visits. 

Through childhood, I was symptom-free. I played sports and ate whatever I wanted. As a young adult, I went to college, traveled, and met a smokin' hot lady. I had never heard of Cystic Fibrosis. 

In March of 2018, I found myself in the emergency room at Highland. I remember my wife looking at me with a very concerned face while the nurses tried to figure out why I was in so much pain. After many days in the hospital with a steady drip of IV fluids and strong pain medication, my baffled primary care doctor explained that I'd had an acute pancreatitis attack, but they didn't know why. I was young and healthy. They told us it was likely a one-time thing. 
 

A follow-up appointment was scheduled a few months out, simply due to procedure.  Before the appointment came, I proceeded to have more and more attacks, eventually ending up in the hospital again. The GI team worked to try to solve my case, but still did not understand what was happening. 
 

They ruled out gallstones and alcohol use. They ruled out family history and anatomic anomalies. I got the dreaded "We don't know" idiopathic diagnosis and was sent on my way with more questions than answers and a medication-based pain management plan.   

I was also sent for gallbladder surgery in hopes it might give me some relief, but all that happened was the removal of a healthy organ and an increase in my pancreatitis. 

I tried a (relatively) low-fat diet. I cut out alcohol for months. I avoided high-impact activities. None of these things helped. I still experienced nearly daily pain overnight and upon waking, sometimes with increasing pain levels throughout the day. There was no warning, no trigger, and no relief other than drugs, hydration, and time. 

I went to the hospital so frequently that I had a system. I'd first go to a blood lab, "clock" my amylase and lipase levels (the enzymes your pancreas makes to digest food), then head to the ED. When asked what "brought me in today," I told them I was having a pancreas attack. When asked how I knew, I'd ask them to pull up my labs from the morning. They would then look at me sideways and admit me. 

Eventually, we pushed for genetic testing, and to everyone's surprise, something came back. I discovered I had 2 CF genes, one common and one less common. When paired, not everyone had issues, but some people did. This was why I didn't have symptoms early in life and why my symptoms were so different than the typical pulmonary implications behind CF. 

So, we had some answers but even more questions. Doctors didn't have answers. Again, being labeled a "unicorn," I was sent on my way to manage the pain. 
 

At this point, I'd been having attack after attack with the GI team telling me my next step would be another surgery. We wanted a second opinion since there was no playbook on how to treat a case this unique.  My wife and I flew to the Mayo Clinic in Minnesota to get additional perspectives. We stayed for a week, meeting with various specialists who worked with Cystic Fibrosis patients and pancreas specialists.

After they re-ran nearly every test I'd had over the last year, the head of the CF program walked into his office on our final day and asked us, "Do you want the story or the conclusion? You have CF. " 

That was five years ago. Not long after this, we learned that men with Cystic Fibrosis are nearly always infertile, and we have our suspicions confirmed with more testing. While the idea of expanding our family was daunting in light of my chronic pain and unknown quality of life, this was still a massive blow. 
 

We had to rethink everything we had thought about the fabric of our lives.  We had to continue to educate ourselves, grow closer to each other, lean on God, and replan for the future we had imagined. 

Over the next few years, new medications would emerge, bringing new hope to the CF community. You may have heard of these modulators, but unfortunately, they did nothing to help my unique case, and staying on them would potentially cause damage to my liver.


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There's so much more to the story, but I've skipped over a number of things for the sake of brevity. Fast forward to today, my pain is more controlled and less frequent.  We still don't have all the answers we want, but we have an amazing, supportive care team.

We also, finally, have our Layla. 

Layla Mae Phillips was born on June 20th, 2024, after years of IVF and 9 transfers. She was our little embryo that could, born strong... a fighter well suited for our now family of three.
 

My fight may not be the more common "Double Delta" Cystic Fibrosis story, but this is all the more reason I'm still motivated to share my experience. There are so many others out there who also have these "nonsense" mutations, and many CF'ers who, like me, are unable to benefit from current treatment options. The fight is not over. I

If you have more questions about my story, please ask! We want to help spread awareness and be a reason more people get involved in the mission of the CF Foundation. 
 

We also want to empathize with the many people in our lives and beyond who are also dealing with infertility due to CF or other causes. There is hope. You are not alone. If you don't have anyone in your life who can relate to your struggles in family-building, know you have us.

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Thank you for reading and supporting our mission to spread awareness, support, and hope. 

The Cystic Fibrosis Foundation continues to do fantastic work, so if you'd like to donate, we are always thankful. We'd be even more thrilled to have you join us for the 2025 Great Strides walk. 

Hope to see YOU there! 

Sean ( and Caroline)