Fruita teen preparing for brain surgery
Fourteen-year-old Carly Adkins of Fruita and her family hope to raise awareness while raising funds for a surgery that may save her life.
Adkins was diagnosed in 2009 with Chiari malformation, a brain malformation that leaves too little room in the skull for the brain. The malformation can push brain tissue downward and cause neurological problems, something Adkins is experiencing.
It’s a condition few people know about, and it can be hard to diagnose, according to Carly’s mother, Lisa Marie Adkins. Lisa Marie recently dyed her hair purple, the color assigned to Chiari awareness, to instigate conversations with friends, neighbors and strangers about the condition.
“We have a really wonderful opportunity right now to tell the world what’s going on. If we can help one family understand what’s going on (with a person who may have gone undiagnosed with Chiari), that’s Carly’s goal,” Lisa Marie said.
The malformation caused Carly’s brain to push into her spine, which caused problems with swallowing and blocked the flow of body-nourishing spinal fluid. Adkins is home-schooled and can barely walk because it exhausts her and causes her hips to dislocate. If she turns her head, she could pass out, her mother said.
The family recently learned Carly needs a complex surgery to alleviate her symptoms from Chiari, which has no cure. An Aurora neurologist plans to perform a decompression procedure that involves making an incision from the middle of Carly’s skull to the second vertebrae in her neck, removing a small portion of the lower part of the skull to alleviate pressure on the spine, and correcting damage that has been done to her spine.
Insurance will cover all but $10,000 to $40,000 of the cost of the $200,000 procedure. Donations can be made to Carly Adkins, care of Western Rockies Federal Credit Union, 577 Kokopelli Blvd., Fruita 81521. Lisa Marie is working on setting up a Facebook page with the slogan for Carly’s fundraising effort, “Carly’s Cause,” and plans to host future fundraising events, including a spaghetti dinner.
People can learn more about Chiari malformation at chiaricare.com.