Holly's Rare Disease Journey

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.

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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.

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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.

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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.

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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.

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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.

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