Karlee is an 11-year-old girl who attends Oakdale Middle School. She is referred to as “the light in the room,” and loves to make people smile. Her family means the world to her, and her best friend is her twin sister, Kami.

Karlee was recently diagnosed with Gorham-Stout disease (GSD), more commonly known as vanishing bone disease.

This disease is an extremely rare skeletal condition with only 300 people worldwide experiencing it. Karlee is the third GSD patient ever treated at Doernbecher Children’s Hospital.

This condition was affecting Karlee’s back and rib cage and causing an extreme curvature, and a potentially critical paralyzing situation with a bone located on her neck.

Karlee had 2 emergency back surgeries that allowed doctors to remove vertebras and parts of her tibia bone. She also had a stint placed in her ribcage to give her more upper-body stability.

This condition also affects her skull and causes fluid to build up in her head, thus causing painful pressure. She travels to Portland once a year to check if the fluid in her brain is draining correctly. She also has a cyst on her brain stem that doctors keep a close eye on.

Karlee takes low-grade cancer medication and receives IV infusions every 6-months.

Karlee has many medical challenges; however, she never allows her condition to define her. She has a zest for life, is incredibly brave and strong, and has one of the biggest hearts you’ll ever meet. She wants her story to inspire others to never give up and to remind others, that they too can be brave and strong.

Karlee will be adopted as the Sparrow to South Medford High School. SMHS students will work hard to earn money for Karlee through sponsored community service.