Buckelew has had four surgeries to alleviate his pain, and four more surgeries after a complication occurred during one of the procedures.
"Trigeminal neuralgia has taken over our lives and is relentless," she said. "It has robbed my child of his life."
The Huntsville, Ala., mom wishes people knew about the real pain that patients with this invisible illness experience.
"If Garrett walked around with a hatchet sticking out of his face, then people would get it, but trigeminal neuralgia is invisible, and I hate it."
'I am a trigeminal neuralgia warrior'
When a flash of pain shot from her eye to her jaw one day in 1998, Patti SanFilippo hurried to the mirror looking for a mark on her face. There was nothing there.
The Bloomsburg, Pa., resident tried to describe the pain to her doctor, but she felt like a lunatic. She spent five years struggling to find answers before she was diagnosed.
Even after multiple medications and surgeries to treat the disorder, none have helped ease her facial pain.
"A typical day in my life knows no real time and follows no structure. Pain wins over all else and many days are spent in bed," she said. "I have missed many family functions, important birthdays and reunions with friends because the pain won on those days."
To stay positive, SanFilippo calls herself a "trigeminal neuralgia warrior." Surviving the "horrendous pain, the harsh medications and lack of awareness" has inspired her to fight for help and understanding of this outwardly invisible disorder.
"If my story has been read and shared then I know I did my part to start people learning, talking about and becoming more aware that such an evil condition exists and needs attention so desperately," she said. "It's hopefully just the beginning, there is still so much that needs to be done."