By JUDY RATTNER
Working with homeless families and victims of domestic violence in Suffolk County she says she has dedicated her career to helping children and families.
A social worker at South Side High School, the mother of three has learned firsthand what it is like to be the subject of a CPS investigation, after she and her husband, Paul, a software engineer, came under suspicion last fall. Knorr is also learning how to deal with the uncertain prospects of her son, Cooper Ryan, who has osteogenesis imperfecta, or brittle bone disease, and has suffered six broken bones in the seven months since he was born. And she is working to raise awareness, and funds, to fight the rare disorder.
The Knorr family's odyssey began shortly after Cooper was born in September, after just 34 weeks and weighing less than 6 pounds. He had several minor complications associated with being a preemie, but after a week in the hospital he joined big sister Camryn, 6, and brother Colby, almost 3, at the family's Huntington home.
Only two weeks later, Cooper was back in the hospital with a fractured left femur. He had been in the arms of his father, who was standing on the front lawn, watching Colby play. When Paul reached out to pull Colby, who was getting a little too close to the street, Cooper's leg broke. At first the family didn't realize what had happened, but in the middle of the night the leg swelled and Cooper was irritable. Early the next morning, they took him to Huntington Hospital, where an X-ray confirmed the fracture. Cooper was transferred to North Shore Hospital in Manhasset, where pediatric orthopedist Dr. Michael Trapeta took on his case.
As is standard protocol with such an injury, both Huntington Hospital and North Shore filed reports on the Knorrs with Child Protective Services in Suffolk County. Cooper was kept overnight so he could be fitted with a special leg harness, and his parents were interviewed by a crisis team. The very next day, an investigator followed up at the family's home, looking around and interviewing Cooper's siblings. Knorr said the investigator was kind and it was clear that the other kids were OK, and that the home setting was safe and appropriate.
Knorr said it was then that she first asked doctors to run genetic tests on Cooper. That wasn't necessary, she was told. Underlying conditions causing broken bones in babies were extremely rare.
But soon there were more problems. Just a day after his special cast came off, Cooper's arm broke. This time it was a spiral fracture, as if someone had twisted his arm, but there were no marks on his skin or other external indications of abuse. Cooper was taken to an orthopedist. And another CPS report was filed.
That night, CPS social workers returned, this time accompanied by detectives. It had become a criminal investigation. There was discussion of removing all three children from the house. Knorr said she thinks Cooper's case was treated differently from most cases, taken up by a Special Victim's Unit at CPS, because of his age and because the femur and humerus are among the more difficult bones to break. Knorr also said she believes she was granted some measure of professional courtesy, and that other families in the same situation might not be as fortunate.
Instead of losing their children to foster homes, the couple made a deal with CPS: they would not be alone with the children while the investigation was pending. So a team of three - Nicole's mother, Aida Arana; Paul's mother, Judy Knorr; and Cooper's godmother, Christine Brown, an English teacher at South Side High School - would take turns staying with the family around the clock, through the holiday season.
"At that time of the second break, I went on a mission to try to figure it out," said Knorr. "Nobody was really helping me - nobody was driving the bus - and I was guilty until proven innocent." So she began researching babies and broken bones on the Internet. Meanwhile, doctors were reluctant to take on Cooper's case because of the allegations of child abuse against his parents.
Knorr eventually took Cooper to Schneider Children's Hospital in New Hyde Park for genetic testing. When his blood work came back on Dec. 21, just two days before the second case against the couple was due to be closed, she had news to share with her caseworker.
A diagnosis
When Knorr called the caseworker to tell him what the genetic testing revealed, he said something she will never forget: "Well, that's good news." The caseworker would be able to close a case - just as Cooper's diagnosis would open a whole world of problems for him and his family. (Knorr says they will have to hire an attorney to get Paul cleared of the original CPS charge of "inadequate guardianship," although he was found innocent of a second charge against him. And she, too, will have to get the accusations against her expunged from her professional record.)
According to the Osteogenesis Imperfecta Foundation, based in Gaithersburg, Md., O.I., also known as brittle bone disease, "is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. There is no cure for OI yet, which affects an estimated 20,000 - 50,000 people in the United States." Victims are sometimes referred to as "snowflakes," because they are fragile and the ailment can affect each in different ways.
Even as she tries hard to give Cooper a normal life, he is hospitalized every eight weeks for treatment at the Kennedy-Krieger Institute in Baltimore, a hospital for children with rare diseases.
Raising community awareness
Knorr says she is learning of other families on Long Island who have children with OI, and she is becoming a self-educated expert on the disorder. She said she is receiving overwhelming community support from administrators in the Rockville Centre school district, and at South Side High from administrators as well as fellow teachers, students and parents. She has teamed up with another OI-affected family to raise money for the O.I. Foundation. They are organizing the first local Making Strides for Better Bones "Walk-n-Wheel" for wheelchairs and strollers (no bikes) on May 3 in Cedar Creek Park in Seaford.
According to Knorr, students have collected more than 600 water bottles to donate to participants, and they are also raising money for the foundation. Some clubs at the high school are sponsoring the walk, Knorr said, while members of other clubs plan to participate - and will fill more than one bus, she said.
Knorr says she is on a mission to make others aware of osteogenesis imperfecta. "I was treated like a criminal, and I know what it's like to be treated like a child abuser," she said.
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