With her infectious laugh and loving hugs, there’s rarely a stranger around 33-year-old Carlie Jackson. She’s a quick charmer, even breaking out into song for someone she just met.
“I’ve got the joy, joy, joy, joy down in my heart, down in my heart to stay!” Carlie exuberantly sings, raising her arms for the grand finale.
Her carefree, loving spirit is contained in her petite 4-foot-6-inch frame. Her tiny hands are perfect for doing the crafts she loves, like making refrigerator magnets out of small beads. She even uses them to do “happy hands,” as her parents call it, which is when she cannot contain her excitement and rubs her hands together quickly.
She loves musicals, magic shows, haunted houses and roller coasters. She enjoys the company of people and pets. She even has a boyfriend of seven years, whom she hopes to be engaged to soon.
However, developmentally she has the mind of a young child. Her mother, Jill Jackson, said Carlie acts like a second-grader. But that isn’t the biggest concern.
Carlie could literally eat herself to death.
According to the National Institutes of Health, Carlie is one of 10,000 to 30,000 people worldwide with Prader-Willi syndrome, or as Carlie calls it “Pretty Willie.”
“I have to watch what I eat,” Carlie explained. “I can’t go into the kitchen by myself … It’s not safe for my body.”
The genetic condition can cause people to overeat, because they always feel as if they are starving. The resulting overeating can lead to obesity, diabetes, heart disease and, in extreme cases, the person’s stomach may rupture, according to the Mayo Clinic.
People with this condition need lots of structure in their lives and for someone else to have complete control over their food — refrigerators and pantries need to be locked or constantly watched, Jill said.
Carlie’s stature, small hands and feet and almond-shaped eyes are tell-tale signs of the condition. Though the condition involves overeating, it starts with infants being labeled as “failure to thrive,” by losing too much weight in their early days, due to poor muscle tone in their mouths and not being able to nurse or bottle feed, according to the Mayo Clinic.
Jill said Carlie was diagnosed when she was a toddler. She cared for Carlie at home for many years. Once Carlie got older, she ventured out to a residential setting in Indiana that Jill said wasn’t prepared to treat PWS successfully. Carlie became morbidly obese, Jill said.
Jill and her husband Fred made the difficult decision to send their daughter to a place that was perfect for Carlie — a residential setting in Wisconsin that specialized in PWS. That is where she has been for the past 10 years — a plane ride away from her parents, who live in Lexington, Ind.
“It was really, really hard,” said Fred Jackson, Carlie’s dad. “We’d only see her on holidays.”
That’s all about to change with the help of Rauch Inc., a New Albany-based nonprofit that works to help those with developmental delays and other disabilities.
Rauch board member Steve Hines, a local builder/developer, has an adult daughter with autism. He said he wondered what would happen to people like her as they move out on their own.
“I have a child with disabilities and I was in the real estate business, so I knew what it took to create a development and I knew what it took to build buildings,” Hines said of bringing the idea of a housing development to the Rauch board.
That idea was to build a community where people with disabilities could live and get all their needs met.
“There’s a need. People with disabilities often aren’t able to communicate or articulate their wants and desires, but I believe they enjoy a quality of life just like anybody else,” Hines said. “We wanted to create an environment that had a quality to it that anybody would want to live in.”
“Our vision statement is ‘Imagine a community where everyone belongs’ and so it helps with that mission in terms of recognizing that people with disabilities are people that we serve and are a part of our community and helping bringing them into our community,” said Rauch CEO Bettye Dunham.
An anonymous $900,000 donation got the ball rolling on building houses located in the Hawthorn Glen subdivision, in Charlestown, that would provide residential care for those with various disabilities. With 12 houses built, Rauch has six more lots to fill. Now, they are campaigning for $75,000, the amount that is still needed to build two of those — one of which will be solely dedicated to serving those with PWS.
Carlie already has a roommate ready to fill one of the spots in that home.
Previously, Rauch worked to provide jobs, preschool, therapy for children and other various services. The housing at Hawthorn Glen is the group’s first step in providing supporting living for adults with disabilities.
“It’s something we could address. It’s been a challenge for us and excitement too,” Dunham said.
Rauch representatives traveled to the residential treatment facility where Carlie lived in Wisconsin to learn more about PWS and how to help those with it. During that trip, they also learned some ideas for designing a house so that the kitchen would not be a focal point and could be secured.
Jill said knowing how to properly treat those with PWS is essential.
“As much as we love having Carlie home, at the same time, we’re not as good for her. Parents have a tendency to spoil and maybe they’ll do better away from you than with you,” Jill said.
If funding is secured, construction will start this summer on the PWS home. The goal is to be finished early next year, Jill said. Carlie can’t wait. She is staying with her parents until she can move in.
“Yeah!” Carlie exclaimed when asked if she was ready for the move. “It’s boring around here [at my parents’ house]. Bor-ring! I want to move with my nice little roommate.”