Rare Disease Day Official!

What does rare mean to you?

Oftentimes it seems as though the term rare is used in our daily lives when speaking about our routines and what we, “rarely do.” And let’s be honest, this is usually an exaggeration. At least for me, it can be. It wasn’t until I heard the name of the disease my brother had for the first time and had zero name recognition for it that the term rare came into a whole new light. AVM, or rather an arteriovenous malformation it was called.

It was rare.18 in 100,000 to be exact. Our local hospital where Preston’s AVM was found, never provided the name of the disease, just that it would soon take his life. Their Head of Neurological Surgery scoffed that he had never seen one this bad before as the case was extremely rare.

Have you experienced those moments where you are actively living something, good or bad, and can’t believe it is happening? It’s like the entire experience almost feels like it has a fog over it. That’s what I felt like. I guess that’s normal. We all tend to believe we’re invincible until we’re proven wrong, some more serious than others.

Let’s back up. It was my last time to go to church with my family before I returned to Mississippi State University for the start of my freshman spring semester. There we sat, my family content in the pew awaiting the sermon, but that’s when the pastor took a moment to call for a special prayer. It was then that we learned a member of our congregation was recently diagnosed with cancer and had a long road of treatments ahead of her. My heart dropped. Our pastor called this member to the front, and many laid their hands upon her as we all joined in prayer. As I sat there, I was overcome with emotions and sorrow for what this sweet lady would endure in her fight to live. Quickly blinking my eyes and turning my gaze upward, I worked to stop my tears. I never cried. Especially in public. I’ve never been an emotional person and was known by those in my life for always having it “together.” But in this moment, my heart truly went out to a lady in my congregation that I had never met before, and I had to fight to hold my composure.

Now, just 6 days from that special prayer in church, I found myself in the Pediatric Intensive Care Unit of Ochsner Medical Center. This time it was me. This time I needed prayers. Well, rather Preston needed them, but I was asking for them. Was that moment in church a precursor to my new reality? How did I go from the girl who felt so deeply for the woman in my congregation with an upcoming battle with cancer to now being the one also in the trenches?

I was never one to make requests publicly growing up. I went through a Christian education my entire life up until college, and I was never open about what I was praying for privately when my class did prayer requests. I felt weird by doing it. Not that it was bad to ask for those requests by any means, it just wasn’t something I liked to share openly. But here I was, posting on my social media accounts, just asking for prayers to be lifted up for Preston. I didn’t have a choice. Preston needed them, his case was deemed inoperable. People starting asking questions, which rightfully so, but if I were ready to share, I would have. If I’m being honest, I was still in shock. I was in that phase where I couldn’t believe what was happening was actually happening. They wanted to know what was wrong. He had an AVM. That meant nothing to them as they had never heard those three letters strung together, much less knew that it was essentially, a ticking time-bomb in his brain. They had never heard of it before. Because it was rare.

So here we are. A rare disease changed my life and the entire perspective I take into each new day, no matter what it may bring. I watched my brother fight for his life. I watched him in pain. I watched him regain the ability to walk after surgeries and every basic necessity many of us take for granted. I watched him make courageous decisions to fight for his life. And because of that, I created Preston Strong.

Today is February 28, 2023, I have the honor to meet with the Mayor of Hattiesburg, Toby Barker. Rare Disease Day is a global movement, one that is dedicated to generating change and increasing awareness for the entire rare disease community. All 10,000+ rare diseases. And today, with the generous help of Mayor Barker, rare diseases are taking another step toward gaining greater public awareness.

Up until now, I have never been in the Mayor’s office, and upon meeting Mayor Barker, one of the first things to catch my eye in his office is the hard hat displaying the logo of where I work; a smirk takes form across my face as I take my seat.

He’s genuinely interested. Interested in what it takes for a disease to be classified as rare. When a disease affects fewer than 1 in 2,000 people. Interested in why I care about rare diseases. I share with him my why, and how Preston is part of the 18 in 100,000 statistic that ultimately led to us meeting at this moment. Because, at its core, the reason I ultimately decided to compete in the Miss America Opportunity was to gain a voice. A voice to not only share Preston’s story as a piece of inspiration, but also do what I can of awareness so maybe, another family doesn’t live the same experience as mine does to this day.

The Rare Disease Day Proclamation is signed, sealed, and delivered. We take photos together to commemorate the day and talk about the city of Hattiesburg as a whole. The upcoming goals for the city, and how I can enhance my service for that matter. I thank Mayor Barker again for both his time and attention to this cause. Even though it is for rare diseases, from experience I can tell you, it’s only rare until it happens to you.