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

acctholly

Jan 262 min read

Holly's Rare Disease Journey

EXPLORE HOLLY'S THOUGHTS

Bone Loss & The Weight of Silence

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

Tomorrow: I'm Fighting for Housing, Not Handcuffs, in Pinal County!

Tomorrow, January 21st, 2026, I will stand before the Pinal County Board of Supervisors to deliver a powerful message: It's time to choose HOUSING, NOT HANDCUFFS! My grandfather, Seledon Martinez , was a WWII Veteran and spent 40 years building the Santa Fe Railroad, literally laying the tracks this state runs on. He taught me the meaning of service and fighting for what's right. Now, as an Extremely Low Income (ELI) disabled student facing major jaw surgery in 8 days, I'm f

Jan 202 min read

Transforming Lives: How AZ ABLE Savings Accounts Empower Individuals with Disabilities

Saving money can be a challenge for anyone, but for individuals with disabilities, it often comes with extra hurdles. Expenses related to healthcare, assistive devices, and daily living support can quickly add up. Fortunately, Arizona offers a powerful tool to help people with disabilities build financial security and improve their quality of life: the AZ ABLE savings account program. This program allows eligible individuals to save money without risking their access to essen

Jan 102 min read

Empowering Voices in Arizona: A Day at the Capitol with Legislators and Advocates

Yesterday, my family and I had the privilege to attend a special event at the Arizona State Capitol Executive Tower Luncheon. This gathering was hosted by the Disability Advocacy & Policy Alliance (DAPA) , bringing together legislators, advocates, caregivers, and members of the disability community. The event was a powerful reminder of the importance of coming together to discuss policies that impact lives and to build connections that can lead to real change. The Mission Beh

Jan 92 min read

Navigating Life's Challenges Before My Second Jaw Reconstruction Journey

Facing a major surgery once is daunting. Preparing for a second full jaw reconstruction brings a whole new level of physical, mental, and emotional challenges. As January 29th approaches, I find myself caught between anticipation and uncertainty. My body feels weaker than before, weighed down by ongoing treatments and the toll of daily struggles. Despite this, I hold on to hope and the determination to move forward. This post shares my experience navigating the difficult mont

Jan 14 min read

Empowering Change: How Voices For The Rare Is Transforming Lives for the Underserved

Every day, countless individuals face the harsh reality of feeling invisible in a world that often overlooks their struggles. For those living with rare conditions or facing unique challenges, the fight to be seen and heard can be exhausting and isolating. This is the reality that inspired the creation of Voices For The Rare , a nonprofit organization dedicated to bringing hope, access, and advocacy to those who need it most. This post explores how Voices For The Rare is maki

Dec 29, 20253 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

Bone Loss & The Weight of Silence

Holly's Rare Disease Journey

EXPLORE HOLLY'S THOUGHTS

Bone Loss & The Weight of Silence

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

Tomorrow: I'm Fighting for Housing, Not Handcuffs, in Pinal County!

Transforming Lives: How AZ ABLE Savings Accounts Empower Individuals with Disabilities

Empowering Voices in Arizona: A Day at the Capitol with Legislators and Advocates

Navigating Life's Challenges Before My Second Jaw Reconstruction Journey

Empowering Change: How Voices For The Rare Is Transforming Lives for the Underserved

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