The final hours of Jeremiah Clark

Kathern Clark holds her 9-year-old son, Jeremiah, on the day he died, at Children's Memorial Hospital in Chicago on May 21, 2009. (Family photo)

Doctors, she said, had inserted the G-tube when Jeremiah was 18 months old because he was having trouble holding food down and gaining weight. More seriously, he was exhibiting severe developmental delays and was eventually diagnosed with profound cognitive disabilities.

He could not walk, talk or play many games like other children. Although he enjoyed rolling around the living room floor with his brother and sisters, he often became too excited and started scratching and clawing, and the fun would have to stop.

When Jeremiah again had trouble gaining weight, he was hospitalized, and a doctor recommended that he be placed in a nursing facility to ensure he would thrive. His mother, who was single and unemployed, said she feared that if she didn't put him in a facility, child welfare authorities would seek custody.

So in 2004, when Jeremiah was 4, Clark put him in the closest available facility to her home that cared for children with disabilities. Alden, then called Mosaic Living Center, cared for about 90 children and adults with disabilities, including blindness, cerebral palsy and cognitive impairment. When Clark toured the facility, an aging brick building on Sheridan Road in Rogers Park, she thought the staff was friendly and the children well cared for.

And at first, Jeremiah had few problems. But in 2007, staffers found him one morning crying and irritable, a state inspection report says. Several hours later he was sent to a hospital, where doctors discovered he had a broken arm. Clark sued Alden, alleging neglect, but she said she didn't move him because the next-closest appropriate facility was far away in Indiana.

She said she continued to visit him as much as possible, taking a two-hour bus trip to the North Side. On nice days, she would wheel him across Sheridan to Lake Michigan, where she would lift him out of his wheelchair, show him the water and whisper in his ear: "Mommy loves you. It's going to be OK."

She also enrolled him at Gale, a Chicago public elementary school a few blocks from the nursing facility. Of the 510 students, 16 had multiple disabilities and severe cognitive impairment. For them, schoolwork involved learning simple skills, such as how to hold a cup.

Moffitt, a special education teacher, said she was trying to teach Jeremiah to grasp objects. Over and over she would place her hand atop his and move it to an object, hoping he could do it on his own someday. His progress was slow. Moffitt estimated Jeremiah's cognitive age at about 6 months.

But she found him to be an easygoing, happy child whose head was in constant motion. His biggest thrill, she said, was "mat time." For 40 minutes each morning and afternoon, teachers would place Jeremiah on a large blue mat, where he would roll from side to side, clutching a red plastic tambourine in one hand and hitting it on the mat to jingle the bells.

The boy's face would light up, and he would exclaim, "Ahhh! Ahhh!" He banged the tambourine so much that Moffitt had to tape it together repeatedly.

When Moffitt began teaching at Gale in the spring of 2009, she had a master's degree in special education and 14 years' experience. She had heard little about Alden but said she immediately noticed that its students were different from kids living at other facilities or with their families. Their hygiene was often poor. Their clothes were frequently too small. Some of their wheelchairs needed repairs.

But more jarring was what she and other Gale employees saw the morning of May 19, 2009, when Jeremiah arrived at school with a yellowish liquid drenching his shirt and pants and dripping onto the floor.

It appeared that the liquid was leaking from his G-tube, but when Wenz, the school nurse, looked closer, she saw that "it was coming out of his abdomen, where the G-tube is inserted," according to her statement to state public health investigators.

Wenz called Alden and had the facility pick Jeremiah up from school.

What Alden staff did next is unclear. Investigators found no evidence that nurses inspected Jeremiah's G-tube or examined his abdomen for signs of bowel obstruction. One Alden nurse told a supervisor that she did do such an exam and found nothing, but she did not document her observations in her nursing notes. Other Alden staffers told investigators Jeremiah appeared normal.

But overnight, nursing assistant Patrick Frimpong told investigators, Jeremiah was "tossing and moaning all night long."

The next morning, Gale staffers were astonished to see Jeremiah back in school.

"He was pale. His eyes were sunken like he was awake all night," Wenz told investigators. "He was shaking and grunting and in a fetal position."

Moffitt said Jeremiah's G-tube wasn't leaking like before, but she knew he was sick as soon as she helped him off the bus; he had little energy and was moaning, something she had never heard him do before. When she placed the boy on the mat in her classroom, he didn't roll around with the tambourine but lay on his side and groaned.

At 9:45 a.m., Wenz asked Alden to pick him up from school, but, according to her statement to investigators, "the nurse at the facility argued with her and said to give him Tylenol."