In the bedroom of her Buckhead home, 17 year old Amelia Holley sits on her bed, guitar across her lap, long blond hair swinging.
She is singing a song she wrote. “Cause faith isn’t faith unless you know who you trust in, and a promise is words. You’re my clarity when lines get blurred.”
The song is called ‘All that I do.’ She says,”I wrote it last year at the beginning of all my 18 surgeries, and I didn’t want to come out on the other end of all the surgeries not seeing what God had done in my life. I wanted the time I spent in the hospital to mean something other than Amelia is sick again.”
Amelia is talking about her 18 brain surgeries. Those 18 surgeries are on top of all the other brain surgeries. Sitting on her bed she is at 41. “Forty one and done,” she and her Mom joke. At least they hope.
Amelia was born with Dandy Walker Syndrome and hydrocephalus.
“Dandy Walker Syndrome is like a big pocket of fluid squeezing your brain and hydrocephalus in Latin means water on the brain.”
Other people get headaches. Amelia’s are so bad they require surgery to relieve the pressure and pain.
“She’s a very complicated case,” her mom says. Claire Holley received the news when she was pregnant with her first born child. The diagnosis was one that is devastating for many families whose children never walk or talk. The foremost experts in the world have said Amelia is one of the ten most complicated cases they have ever seen. Shunts that should be able to help with the pressure and the fluid, keep failing. But not Amelia. There were things she couldn’t do, like run. “It gives me headaches,” she explains. But in most respects she had a normal upbringing. As the vice president of her senior class at Riverwood High School, and member of the Beta Club and National Honor Society, Amelia is poised to enter college better prepared than the average child.
Read the rest of Amelia’s AMAZING story at 11 Alive News!