Learning to Pivot with Positivity

Holly's new jaw reconstruction. Gorham-Stout Disease patient.

As many of you know, I live with a rare condition called Vanishing Bone Disease. This illness has taken my jaw twice and has completely changed how I live day to day. Right now, I rely on a feeding tube for all my nutrition and hydration while undergoing ongoing treatment.

I’ve been patiently waiting for a full jaw reconstruction, which was originally scheduled but had to be postponed. My oral maxillofacial surgeon and ENT oncology team are currently working to customize a joint replacement along with the jaw to make sure everything is just right. We’re expecting my surgery to be officially scheduled this week, with the procedure planned for sometime in December.

Although these changes have brought challenges, they’ve also given me a greater opportunity to advocate and share my story. Life doesn’t always go as planned, but I’ve learned that it’s in these moments we must learn to pivot, stay hopeful, and keep a positive attitude no matter what comes our way.

Thank you all for your continued love and support.