Shelley’s Journey, A Community’s Support, and a Life Filled with Heart

When Shelley Radinsky was born, her family knew how special she was. They just couldn’t figure out why.

For a long while, her parents and doctors searched for answers, paging through “thick” medical books, as her father Harland recalls. “He couldn’t figure out what was wrong with her,” he says. “It’s an orphan syndrome, and there was almost nothing written about it.”

She was already twelve years old when the breakthrough finally arrived. A pediatrician from St. Louis described her symptoms at a medical conference in Chicago, where a doctor listened intently and said, “I know exactly what she has, and I’m going to come down to St. Louis and help her. I’m not going to charge the parents.”

And he did just that. That’s how Shelley learned about Prader-Willi syndrome.

A Hunger That Never Turns Off

Prader-Willi is a rare syndrome, so rare that even specialists often struggle to initially recognize it. For Shelley, it affected everything from her muscles to her cognitive development, but the hardest part proved to be the constant hunger caused by a malfunction in the brain’s appetite control center.

“It’s like that light over there,” Harland explains. “You can’t turn off the hunger. We eat, and we can stop. They can’t.”

Harriet, Shelley’s sister, put it a lot more plainly:

“I grew up with the kitchen door locked.”

Individuals with Prader-Willi can become dangerously ill from overeating, so Shelley’s family had to be on watch. Every fridge, every pantry, every cabinet…locked. Every meal…monitored. Every holiday…carefully drawn out.

“She went home for Thanksgiving once and ate too much,” Harriet remembers quietly. Shelley was in her 30s at the time. “She was 216 pounds and started to turn blue. We had to rush her to Cardinal Glennon Hospital.”

Harland adds, “Her stomach can expand to the point it’ll perforate. It’s very complex, and very dangerous. It’s awful, a terrible syndrome. When she was diagnosed, I probably cried for about two weeks.”

Finding Proper Safety and Care

For families like the Radinskys, safety is more than an option, it’s a necessity. Which is why Shelley moved into her current home, operated by Easterseals Midwest.

The house becoming established was not an easy task. Some neighbors were concerned, imagining all kinds of fears about the individuals who could live there. Harland remembers the conversations very well.

“They were afraid the kids would ruin their lawns or break their windows,” he said. “We had to convince them that these kids are very mild. They’re not going to hurt anything.”

Luckily, the neighborhood welcomed Shelley with open arms, and she’s been at it ever since.

The staff in her home were able to understand her needs deeply. Food is secured; routines are structured; and Shelley is surrounded by those who know how to help her live in safety…and with joy. She shares the house with others who have similar challenges, including a young lady with the same syndrome.

Harriet summarizes it simply: “She can’t live on her own, because of the food issues. This house is what keeps her safe.”

A Lifetime of Love and Hope

Supporting Shelley has never been a big issue for the Radinskys. Only an act of love. They’ve traveled across states to attend conventions with other families, joined support groups, and spent a large portion of their lives seeking answers and creating community.

But he never stopped being by her side - advocating for her. And neither did Harriet. Neither did anyone in her life.

The heartbreak, the resilience, the bravery…every bit of their experience echoes what so many other families living with rare syndromes face each day. That’s what makes Easterseals’ Community Living Program so essential: it offers housing, but also provides safety, structure, and dignity.

Shelley Right Now

Because of her support team and stability of her home, Shelley is able to enjoy things in ways there may not have once been possible. She laughs with others, sticks to her routines, and maintains connected with her family, who visit, advocate for her, and love with ferocity.

While her syndrome may be rare, the impact she is making is anything but.

This is a story that reminds everyone that, regardless of diagnosis, every person deserves a safe home, a kind community, and a living brimming with meaning.