Screaming Without a Voice: The Reality of the "Bridge to Care" Gap

I’m sharing this update from my hospital bed because "lived experience" isn't just a buzzword for me—it’s my autobiography. Recently, I had to push through extreme pain and a "silent" voice in the ER to get the testing I knew I needed. The results showed my jaw had shifted and infection had set in, leading to emergency surgery. But the hardest part of this journey hasn't just been the medical crises; it’s been the battle for my reality to be acknowledged. The Truth of the "Br

acctholly

5 days ago2 min read

Holly's Rare Disease Journey

EXPLORE HOLLY'S THOUGHTS

Screaming Without a Voice: The Reality of the "Bridge to Care" Gap

5 days ago2 min read

Home. Discharged and recovering.

My jaw is wired shut, but my mission is wide open. Update: Hospital discharge! My right fibula is now my new jaw. I’m nonverbal and tube-fed for now, but I am filled with more gratitude than ever. To my "found family": You are my backbone. To the injustice in this world: I am coming for you. Living with Phantom Bone Disease means I don't just survive—I persevere. I was chosen for this path to be a light for those in the dark. Resilience is my superpower. # Mandibulectomy #Rar

Feb 201 min read

Bone Loss & The Weight of Silence

Holly is living with Gorham-Stout Disease smiling big at the Desert Botanical Garden in Queen Creek, AZ. Living with Gorham–Stout disease means living with uncertainty in a body that doesn’t follow the rules. It’s a rare disease—so rare that many doctors never encounter it, and many systems aren’t built to recognize it at all. For me, it has meant bone loss, constant monitoring, and learning to coexist with a condition that can change everything without warning. In two days

Jan 262 min read

Victory in Florence: The People Said NO to 287(g) and YES to Community Care

Yesterday was a historic day for Pinal County. We gathered in Florence at the Board of Supervisors meeting with a clear mission: to protect our neighbors and demand a government that serves all of us. The turnout was incredible. We stood shoulder-to-shoulder—community members, advocates, and families—united against the expansion of ICE powers in our county. The Victory: NO to 287(g) The message we delivered was loud and clear: We do not accept the harassment of our brown cit

Jan 222 min read

Standing in front of an Airstream Camper at Schnepf Farms, AZ.

I am currently undergoing treatment at a cancer center. Every day, I take Sirolimus and Fluconazole, and I receive regular Zometa infusions. Recently, a G-tube was placed, and I now rely entirely on prescribed Kate Farms formulas for both nutrition and hydration.

I’m now over a year into treatment. I’m awaiting the creation of custom titanium joints for reconstructive jaw surgery, which will require two specialized teams—an ENT surgeon and a maxillofacial surgeon. Previously, my left fibula was used along with titanium plates to build a new jaw. This next operation will use my right fibula. After this, I will have no more donor bones available for reconstruction. I’m currently preparing myself mentally for this major surgery.

I’ve undergone numerous operations, and the features of my face and body are no longer shaped solely by the hands of God—but by surgeons and science. Still, I long to have a functioning jaw and teeth again. With the right experts and the advancements in medical technology, I believe that day will come.

Before all of this, I had a deep passion for cooking. That chapter of my life has shifted, and I’ve found new purpose in helping others. I returned to college and currently hold a 4.0 GPA. My goal is to be accepted into a Radiologic Technology program. After undergoing countless CT scans myself, I’ve developed a genuine fascination with the technology behind them.

I’ve given full permission to my medical team to use my case for research, in hopes it can help others in the future. However, I worry about the lack of restored federal funding for this kind of work, and what that means for medical advancement. Despite the challenges, I remain grateful. I believe everything is unfolding in divine order.

Today, I am focused on becoming a problem solver and being part of the solution. This has led me to advocate for patients like myself and to speak out on issues of economic injustice in healthcare.

Thank you for taking the time to learn more about me.

"Winning is great, sure, but if you are really going to do something in life, the secret is learning how to lose.Nobody goes undefeated all the time. If you can pick up after a crushing defeat, and go on to win again, you are going to be a champion someday."

-Wilma Rudolph

HOLLY'S FAVORITE

Looking over Fjadrargljufur Canyon, Iceland

Join me in my journey as I navigate through the ups and downs of living with Gorham Stout Disease. Experience the highs and lows with me as I strive to spread awareness and find hope in the face of this rare condition.

Contact

Screaming Without a Voice: The Reality of the "Bridge to Care" Gap

Holly's Rare Disease Journey

EXPLORE HOLLY'S THOUGHTS

Screaming Without a Voice: The Reality of the "Bridge to Care" Gap

Home. Discharged and recovering.

Bone Loss & The Weight of Silence

Victory in Florence: The People Said NO to 287(g) and YES to Community Care

ABOUT HOLLY

"Winning is great, sure, but if you are really going to do something in life, the secret is learning how to lose.Nobody goes undefeated all the time. If you can pick up after a crushing defeat, and go on to win again, you are going to be a champion someday." -Wilma Rudolph

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HOLLY'S FAVORITE

"Winning is great, sure, but if you are really going to do something in life, the secret is learning how to lose.Nobody goes undefeated all the time. If you can pick up after a crushing defeat, and go on to win again, you are going to be a champion someday."

-Wilma Rudolph