CUYAHOGA FALLS - 24-year-old Kaitlynn Heinl is just 65 pounds. She suffers from a rare congenital syndrome called Superior Mesenteric Artery Syndrome or SMA.
Her journey started at age 12, but for more than a decade she says she was misdiagnosed as someone with an eating disorder.
She says because she was diagnosed so late, her options are limited and not guaranteed. She removed her feeding tube in August because she said it made her ill and impacted her quality of life.
Every day she eats nearly 30,000 calories, but since her condition causes her to involuntarily regurgitate everything she consumes, she's still losing weight and is severely malnourished. But she says this existence is better than how she was living before.
She is strongly supported by her family and her faith and is using her time to help spread awareness.
She says she has accepted that her prognosis is now terminal. Watch Kaitlynn's interview below and read her story in her own words below. Learn more about SMA click HERE