Teen struggles with rare disorder

(CNN) - An Arkansas family is fighting to save their daughter's life. She has been diagnosed with a rare disorder and needs expensive surgery that insurance won't cover.

Raven Walton is a 15-year old teenager that dreamed big dreams, as a competitive dancer all of her life. But for the past few months, she has spent most of her time on the couch.

Raven was recently diagnosed with a rare digestive disorder called, chronic intestinal pseudo obstruction.

"It's like living in a prison, you're body's trapped, your body won't let you do anything."

Raven is unable to digest food properly, because the nerves in her stomach don't work efficiently. She's dropped 20 pounds since her diagnosis last summer, and she vomits ten to fifteen times a day.

The only thing she can eat is a nutritional supplement called ensure.

"The pain is horrible... it's like a rat living inside of you and chewing away at your stomach... it gets worse after you eat."

Her mother says the condition is life-threatening. It's something she understands well; she suffers from the same disorder.

"I know what it feels like, I know what she's going through, it takes away your youth."

Stacy sawyer was 24 years old when she was diagnosed, she lived off a feeding tube for years, until her parents mortgaged off their house to pay for a special surgery, to implant a pacemaker near her stomach.

"The little machine saved my life, I went from being on a feeding tube for two years, to eating on my own."

Now Raven needs the same surgery, but Sawyer says again insurance won't cover it. Sawyer thinks about last summer, when Raven tried to hide her sickness from the family, because she was scared.

"I feel guilty, even though I didn't give it to her on purpose, it's because of me she has it."

She says insurance will pay for a feeding tube, but not for Raven's procedure which costs $40,000.

"It's broken when they'd rather... put a 15-year on a tube... then to give her this which would give her a chance at quality of life."

The family is now racing to scrape together money through fund-raisers. In two months they're already up to $11,000 dollars.
time is of the essence, but Raven says her mom helps her keep perspective.

"It's different... it's still fresh... she was sick now I've got it , it's weird."

Raven keeps her eyes on her dream which is to continue her career as a dancer.

“I guess it's when I get on stage I come alive. You know, it just feels like
normal.”