Janet Mata's condition, Dermatomayosis, is somewhat of a mystery to her, her family and even doctors.
But what the 19-year-old does know, is that it's deteriorating her body at a fast rate.
This past June, came a turn for the worst.
Now Mata depends on a respirator and a walker to get by " but not even that has changed her love for life.
"I love life, I love living," Mata said. "I go outside and see a butterfly and that's beautiful because it means I'm still here. I want other kids to know that even though (they TMre) sick, (they) can become somebody."
It's this can-do attitude that Mata hopes to pass along to others by writing her own book. It's also what caught the attention of Sarah Book Publishing Company in Brownsville. Manager Juan Tony Garica said Mata TMs story would be inspirational to young and old.
"The sadness is not that she's actually going to die, she seems sadder when she spoke of people judging her for her appearance, Garcia said. So maybe she'll help educate other young kids out there."
Mata is optimistic about her battle, but admits that like her prognosis, she feels her body weakening.
"You can tell your body is changing, and I can tell my body is changing, the teary-eyed girl said. It's getting more tired - like maybe I won TMt be able to (beat it)."
The publishers said they're ready to put Mata TMs story on print as soon as possible, and at no cost.
"It's really going to happen, Mata said, I am very excited and I am very grateful."