Carlie Jackson talks to her father, Fred Jackson, on Saturday. Carlie, who lives with Prader Willi Syndrome (PWS), has to be under round-the-clock supervision to ensure her safety. PWS is a condition that causes Carlie to feel as though she is starving every minute of her life. Without supervision, she could easily overeat herself to death. Fred Jackson is working on a book to describe the trials and the joys that have come into his life as a result of having a daughter with PWS. (Staff photos by Ken Ritchie/kritchie@madisoncourier.com)
Carlie Jackson talks to her father, Fred Jackson, on Saturday. Carlie, who lives with Prader Willi Syndrome (PWS), has to be under round-the-clock supervision to ensure her safety. PWS is a condition that causes Carlie to feel as though she is starving every minute of her life. Without supervision, she could easily overeat herself to death. Fred Jackson is working on a book to describe the trials and the joys that have come into his life as a result of having a daughter with PWS. (Staff photos by Ken Ritchie/kritchie@madisoncourier.com)
Carlie Jackson always feels like she's starving - no matter how much she's had to eat throughout the day, and there's no way for her to stop the cravings.

Carlie, 33, lives with a genetic condition - Prader-Willi syndrome - that causes her to feel like she is forever in need of a basic necessity of life: Food.

"It makes me feel hungry all the time," she said.

Her parents, Fred and Jill Jackson, noticed something wasn't right soon after their daughter's birth. She didn't want to eat or take a bottle, and she didn't have the natural sucking reflex that most newborns have, her father said.

Her parents had to force-feed her every two hours to keep their baby girl alive.

Doctors didn't know what to think of the Jacksons' situation. They told the new parents that Carlie seemed to have issues with her muscles and that she would be short. Doctors also identified some developmental issues.

But it wasn't until several years later that doctors diagnosed Carlie with Prader-Willi syndrome.

Prader-Willi syndrome, first identified in the 1950s, results from an abnormality in the 15th chromosome. There is typically no family history of the disease.

The rare condition, which affects about one in 15,000 births, can lead to high anxiety and life-threatening obesity because of a slow metabolism and excessive eating.

"That's all you think about," Fred said. "It's what you brain is telling your body."

Children and adults with Prader-Willi syndrome often have heightened peripheral vision and can quickly scan a room in search of food to curb their hunger, Carlie's mother Jill said. In some extreme cases, people with the condition will steal food - or even eat spoiled foods - to try to satisfy the always-constant hungry feeling.

"They're sneaky," Jill said of people diagnosed with the condition. "They're like stealth bombers."

Carlie's parents and caregivers have to be constantly aware of food in the room or when visiting other places. If allowed, people living with Prader-Willi syndrome could eat too much and rupture their stomachs.

"You would overeat yourself to death," Jill said.

Jill had always told Carlie leaving a parent's home was a step children take in their lives, and her parents agreed to allow her to take that step after high school graduation. After the Jacksons researched services, Carlie moved into a group home for people living with developmental disabilities.

But Carlie's weight increased to a very unhealthy level after just four months in a group home. Caregivers didn't fully understand the scope of Carlie's condition, and Carlie couldn't stop the intense need to find food or sneak food when the caregivers might not be looking for a minute or two.

"You have to be on it all the time," Jill said.

After the failed attempted in the group home, Fred and Jill found a specialized residential setting for people living with Prader-Willi syndrome in Wisconsin. Carlie moved more than 400 miles away from her family so that she could get her weight and emotional health under control again.

Carlie also learned about herself - and how to attempt to manage her condition - while in Wisconsin.

"She never knew her own diagnosis," Jill said.

Carlie's weight and emotional health returned to healthy levels after several years of living out-of-state in a strict structure with a specialized housing design and a trained staff.

Yet the distance was difficult to deal with for Carlie and her parents.

About two years ago, Carlie's parents met officials with Rauch, Inc. - an organization that supports people with disabilities - during a Developmental Disabilities Commission meeting where Fred discussed the lack of services available in Indiana for people living with Prader-Willi syndrome. Only about two to three children are born with the genetic condition each year in Indiana, he said.

Still, Rauch staff agreed a need for services was there. Officials discussed adding a specialized Prader-Willi syndrome house to their living community at Hawthorn Glen in Clark County, which currently serves 36 other people with developmental disabilities.

Staff members visited the facility where Carlie lived in Wisconsin to learn how to provide support for Carlie and future roommates, before deciding to move forward with a specialized living environment at Hawthorn Glen.

A new phase of construction, which will include the specialized Prader-Willi syndrome house and three others at Hawthorn Glen, was announced last fall. Rauch officials expect the home to be completed sometime in 2015, after securing the remaining $70,000 in matching funds for the housing phase.

Carlie returned home to Indiana to be with her family in January after the project fundraising began.

Now that she's back home, Carlie and her family continue to monitor her lifestyle to maintain a healthy weight. Carlie exercises at least an hour each day and her parents monitor her calorie intake.

And she looks forward to her next adventure - her own home at Hawthorn Glen. She's excited about the opportunity to be just minutes away from her parents, instead of hundreds of miles.

"It was hard for me to be away from my family," Carlie said. "I'm happy because I'm back home in Indiana."