Hi, I’m Holly.

In 2021, I was misdiagnosed with Follicular Lymphoma (oral cancer). After a long, painful journey, I finally learned I have Gorham-Stout Disease a rare and debilitating condition where my jawbone is slowly disappearing for the second time. I’ve now been in treatment for over a year, facing complex surgeries, relentless pain, and countless unknowns.

Gorham-Stout Disease, also called “vanishing bone disease,” is extremely rare. But rare doesn’t mean impossible—1 in 10 people are living with a rare disease. If it happened to me, it could happen to someone you love.

Trying to get answers and treatment has drained every financial resource I had. Like so many others with rare conditions, I’ve spent everything just trying to survive hoping for a cure, some relief, or even just stability. The emotional toll of spending everything you have on your health creates a deep feeling of desperation and hopelessness that’s hard to explain but maybe you’ve felt it too, in your own way.

I live with depression, anxiety, and chronic pain, yet I still find purpose in advocacy, education, and fighting for others who are struggling. I'm currently a part-time student at Central Arizona College, and though my original dream of becoming a Radiologic Technician may no longer be possible, I’m finding new ways to give back and created a blog site in hopes to connect with others who are struggling and share awareness. I’ve found that expressing myself through art has eased my stress levels and just like being outdoors in nature has brought me peace of mind.

I’ve been declared a disabled individual and rely on SSDI benefits. Which puts me extremely below the poverty level. Not wanting to be a burden or cause hardship to others, I have applied for low-income housing for people living with disabilities. Unfortunately, I have not had any luck and the waiting lists are 3-10yrs. I know I will not live that long. My goal is to have a customized van where I can live safely and independently while continuing treatment and advocacy work. A van would give me mobility, shelter, and dignity. With the freedom to stop and rest whenever it is needed.

My next jaw reconstruction surgery has been delayed again this time while they manufacture custom titanium replacements for my jaw and joints, which adds several more months of waiting and pain.

I’m asking for your help not just financially, but to share my story. Someone you know may be struggling with a rare disease, invisible illness, or financial hardship from medical care. There is power in numbers, and no one fights alone. We all deserve to be seen, heard, and supported.

Thank you for reading, sharing, and caring.

With love and hope,

Holly

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