October 20, 2005
Schools, camps balance desire to accommodate students with medical problems and their ability to help.
In the summer of 2002, Liza Wohlberg had no idea that her life was about to irrevocably change. The 7-year-old, who loved to dance and play with her dog, was enjoying the summer vacation between first and second grade. On a family trip to Canada, Liza's mother, Terry, noticed that her daughter couldn't seem to get enough to drink. When the problem persisted, Terry took Liza to the pediatrician. She was immediately diagnosed with juvenile-onset (type 1) diabetes.
From the day she was diagnosed, Liza's existence became marked by frequent blood sugar testing, regular insulin shots and the need to vigilantly monitor food intake. The Wohlbergs grew adept at the new routine, but another problem loomed: school was starting up soon, and Liza would have to deal with her condition outside the protective cocoon of home. Terry immediately called Shelley Lawrence, principal of the lower school at Sinai Akiba Academy in Westwood, to discuss Liza's needs.
When faced with cases such as Liza's, Jewish institutions must balance their desire to accommodate children's special needs with their ability to do so. Besides diabetes, schools must handle chronic conditions such as asthma and severe food allergies, which all can have emotional as well as medical components. Practically and educationally, the other children at a school may have to enter the equation as well. For a time, Liza kept her medical condition a secret, but eventually she found an appropriate moment to tell her friends.
These days, a broader understanding of diabetes is especially valuable for children and their parents, because cases of type 2 diabetes -- which is closely associated with obesity -- are reaching epidemic proportions.
People with diabetes have a shortage of insulin or a decreased ability to use insulin, a hormone that allows glucose (sugar) to enter cells and be converted to energy. With type 1 diabetes, cells in the pancreas no longer make insulin because the body's immune system has attacked and destroyed them. When diabetes is not controlled, glucose and fats remain in the blood and, over time, damage vital organs including the heart, eyes, kidneys and nerves. To survive, people with type 1 diabetes must have insulin delivered by injections or a pump.
After Liza was diagnosed, Lawrence, the school nurse, the P.E. instructor and Liza's teachers all met with the Wohlbergs to manage Liza's diabetes within the school setting.
The challenge was compounded because Liza didn't want her classmates to know about her condition.
"I didn't know what people would think," said Liza, now in the fifth grade. "I was afraid it would change my relationships."
The school plan took Liza's feelings into account, allowing her to test privately, first in the bathroom, and then at the area where backpacks are kept. Her teacher devised a special signal to remind Liza when it was time to test.
"When we toured the school [before enrolling], they talked about caring for each child's soul," Terry said. "With this experience, I really felt that came into play."
In the fourth grade, Liza received the Ramah Scholarship Award, a free month at Camp Ramah in California. Like Sinai Akiba, Ramah considered Liza's need for independence along with the institution's need to ensure her safety. By this point in her life, Liza was wearing an insulin infusion pump, and was quite adept at monitoring her blood sugar.
Ramah deals with campers' medical needs on a case-by-case basis, said Dr. Andrew Spitzer, chair of Ramah's Medical Committee and an orthopedic surgeon at the Kerlan-Jobe Orthopaedic Clinic. Besides kids with diabetes, the camp has hosted children with asthma, those on various medications and even a child with cancer.
"The child [with cancer] was at a point in his treatment that he could participate with some special arrangements on our part. For others, that might not be feasible," Spitzer said. "We're willing to look at each case to see if we can offer the positive, life-changing Jewish experience that camp provides." (Ramah also runs a special program, called Tikvah, designed for Jewish adolescents with learning, emotional and developmental disabilities.)
As for Liza, the bright, articulate fifth-grader fills her days with school, homework, dance classes and jewelry making. She said her Sinai classmates were overwhelmingly supportive after she told them about her condition -- right after another girl in her class was also diagnosed with diabetes.
While Liza was at Ramah, two classmates who remained in town enlisted some friends to create and sell green-and-white string bracelets to raise money for diabetes research. The school is allowing the girls to have a booth at its Chanukah boutique, and waiving the usual vendor fees. Students, families and teachers have repeatedly participated in the Juvenile Diabetes Research Foundation's annual walk, and will do so again on Oct. 23.
The Wohlbergs are grateful for the support they've received from Jewish institutions.
"Liza was treated in such a way that has increased her esteem and confidence," her mother said. "It could have gone the other way.... They could have created more shame instead."
The Juvenile Diabetes Research Foundation's annual Walk to Cure Diabetes takes place at Santa Monica South Beach Park on Sunday, Oct. 23. Registration opens at 8 a.m.; walk begins at 10 a.m. For more information visit walk.jdrf.org or call (626) 403-1480.