CHARLESTON, S.C. (WCBD) – 11-year-old Ainsley is small, but she has made a big impact on the community. One of only 150 people in the world and 34 people in the United States diagnosed with Alexander’s Disease, she is the only case in South Carolina.

Her grandparents, David and Libby Jenkins, have been raising Ainsley and her brother Aiden for their entire lives. David describes Ainsley as “the rare of the rare.”

The nervous system disorder causes an enlarged brain, seizures, intellectual disabilities, and delayed development. Despite the difficulties of her condition, Ainsley is always smiling.

Her family, friends, doctors, and nurses gathered at Lava Salon in West Ashley to remind Ainsley how much she means to them. Everyone was pampered with hair and makeup, then taken out for a pizza lunch.

Those in attendance thanked Ainsley for always being an inspiration and continuing to bring awareness to Alexander’s Disease.