Alexis Rocciola hopes to raise awareness about hydrocephalus, an incurable brain condition she has been living with since birth, with the star who has inspired her the most, Taylor Swift, at her Sacramento concert on August 27. An Advisory Council member of the Hydrocephalus Association Teens Take Charge program, she hopes to inspire other teens to find creative ways to raise awareness.
Petaluma, CA | August 24, 2013
Alexis “Lexi” Rocciola, a local Petaluma teen, was selected by radio station Froggy 92.9 to meet Taylor Swift and then attend her Sacramento concert on August 27, 2013. Lexi is hoping to share with Swift her compelling story of living life with hydrocephalus, an incurable brain condition where the only treatment option requires brain surgery. She hopes to raise awareness of this little known condition. To date, Lexi has undergone eight brain surgeries to treat her hydrocephalus. She is 17 years old.
“I am going to the concert with my mom, dad, and sister, but only my mom and I are meeting Taylor,” shared Lexi. “I have been to many Taylor Swift concerts before, but this time is way more exciting because I will be meeting her! I hope to increase awareness about hydrocephalus and I want Taylor to know how much her music has helped me. I hope I will inspire her as much as she has inspired me!”
Lexi was diagnosed with hydrocephalus via ultrasound while her mother, Miaja, was still pregnant. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid within cavities of the brain called ventricles. The increase in fluid puts pressure on the brain and, if left untreated, can be fatal. One to two of every 1,000 babies are born each year with hydrocephalus. The only effective treatment for hydrocephalus is surgery, usually the implantation of a device called a shunt, which drains fluid from the brain to another part of the body. Hydrocephalus is the most common reason for brain surgery in children. However, anyone can get hydrocephalus at any time through a brain injury, infection, or as part of the aging process, among other reasons. People touched by this condition face a lifetime of procedures and brain surgery. The medical costs for treating hydrocephalus are over $1 billion a year in the U.S.
The concert will take place on August 27 in Sacramento. Lexi is extremely excited and cannot wait to meet Taylor and see her perform.