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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.” |