Marcus Thomas-Winfrey was a terror on wheels when he was child says his mother Arbutus “Beauty” Winfrey, a former Oak Park resident who now lives in Austin.

Marcus suffered from Prader-Willi syndrome, a congenital disease caused by a missing gene. The disease results in an insatiable appetite and sufferers often are afflicted with obesity, reduced muscle tone and diminished mental ability.

Marcus was only 18 when he died on March 8, 2009 while a resident at the Prader-Willi Homes of Oconomowoc, Wis., where he had lived since he was 12.

His mother is still searching for answers as to why he died. She blames employees of the therapeutic home for not taking her son to the hospital in the two days before he died, even though he said he couldn’t feel his lower limbs and wouldn’t move. On a Friday afternoon two days before he died, Marcus was transported in a van home from his job at a Harley Davidson Motorcycle club where he folded towels, but he didn’t make it into his residence at the facility.

“He came home from work, but he never made it into the house,” Beauty Winfrey recalled. “So the school called me and told me that Marcus is playing again. He’s sitting in the middle of the parking lot.”

Beauty recalled Marcus often pretended to lose feeling in his extremities and demand to be taken to the hospital if he didn’t get his way or just wanted attention. But this time she could hear him in the background while Prader-Willi Home employees were on the phone with her, and she could tell by her son’s voice that he was not playing this time.

“All I heard was my son yelling into the phone ‘Mom, I can’t feel my f—ing legs and they are not taking me to the doctor,'” Winfrey recalled. “I knew there was something wrong. I could hear it in his voice.”

Marcus sat in the parking lot and on the grounds for hours. Employees finally got him into the house by 2 a.m. and they sat him up in a chair.

Winfrey told the caregivers that they should take Marcus to the hospital where he had been taken for an examination, but not admitted, on Tuesday of that week after complaining of a loss of feeling in his lower extremities.

“Nobody can explain to me why they never took him back to the hospital,” Winfrey says. “If Marcus ain’t got what he wanted by now, he’s through playing.”

Winfrey’s younger son, Malik, had a 102-degree fever, so she couldn’t leave him to visit Marcus. All of Saturday, Marcus was in his room sitting up in a chair or on the floor but not in his bed, his mother says.

At around 11:30 a.m. on Sunday, March 8, Winfrey, while in the middle of her shift doing housekeeping on the oncology ward at UIC Hospital, got a call from the home.

“They still weren’t giving him the phone,” Winfrey said. “They’re relaying a message, because they want him to walk to the telephone…

“Tell my son that I love him very much” was the message Beauty had for her son.

Then she heard his response in the background: “I love you very much, and I’m going to be just fine.”

“I felt a chill go through my body,” Winfrey recalled. “I felt that go through my body, and it hurt me so bad. I didn’t understand what he meant then, but now as I play it back I get some tears of joy, because I know he was at peace with what was getting ready to happen.”

Around 2:30 that same afternoon she got another call from the home.

“He had stopped breathing, and we tried to resuscitate him,” the employee on the phone told Winfrey. “I’m sorry to inform you but your son is dead.” 

“They let him sit there all day Friday, all day Saturday, and by Sunday afternoon the blood clots had consumed his entire body and he wound up having a massive heart attack right there on the floor of his bedroom,” Beauty Winfrey said. “And nobody can explain to me why they never took him back to the hospital.”

Marguerite Rupnow, director of operations at the Prader-Willi Homes, did not return multiple calls concerning the events leading up to Marcus’ death. The official cause was listed as pulmonary embolism and deep vein thrombosis.

Winfrey has talked to many lawyers, but says that under Wisconsin law only the spouse or child of an adult – which Marcus was because he was 18 – can sue for wrongful death. Winfrey finally gave up hope in finding answers and justice in the courts. But she’s still upset with the way her son was treated, wondering if his death could have been avoided.

“I let it all go,” Winfrey says. “It was too hard to keep having the same conversation and getting the same results.”

Marcus Winfrey was born on Oct. 22, 1990 and attended grammar school and high school in Oak Park. He was diagnosed with Prader-Willi syndrome at age 7 and by middle school he had to be sent to a special school, because he would attack other kids and teachers if he didn’t get his way.

Still, he had a loving side. He enjoyed collecting rocks, trading cards, old pennies and recipes, and he was fixated on cleaning rocks, polishing them for hours. Because of the disease, he had a compulsion to eat. His mom had to put a lock on the medicine cabinet because he would eat anything and everything, including toothpaste and chewable Tylenol. She put a door on the kitchen of her Oak Park apartment. When he broke through that, Winfrey put a 7-foot chain around the refrigerator. He got in anyhow.

But Winfrey prefers to remember the good times, especially her son’s smile.

“He was a kid who just lit up your life whenever you met him,” she said.