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Erica, 14, and her sister Shareen, 18, live with
their grandparents. Erica, who has Tourette's syndrome, sleeps in
the family room and would love to renovate it into a "real bedroom"
of her own.
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Published Sunday, November 24,
2002, in the San Jose Mercury News
THE
WISH: CARPETING, DOOR AND BLINDS TO RENOVATE A BEDROOM
Strength in the face of disability
erica
Andrada is like many 14-year-old girls. Her favorite color is purple.
She loves to shop for makeup. And she wears her silky auburn hair
in a high, bouncy ponytail.
But having Tourette's syndrome sets her apart. The rare brain disorder
causes her to jerk and twitch involuntarily, and to utter sounds
that turn heads and make her the subject of sometimes ruthless teasing.
There is no cure for the syndrome, and treatment has been unsuccessful
for Erica, who has endured years of changing medications, dreadful
side effects, sleepless nights and frustration beyond what most
adults could imagine.
This fall, when she started her freshman year at Branham High School
in San Jose, Erica stood up in front of her peers in each of her
classes to explain the disease and her symptoms. It's something
the bright, articulate girl is used to doing with strangers. Her
grandparents, Steve and Delores Andrada, and her 18-year-old sister,
Shareen, marvel at Erica's strength and bravery. They have been
a tight-knit family since Erica and Shareen were babies and their
birth parents were unable to care for them. The Andradas' grown
son also lives with them in a cramped three-bedroom home.
Because of Erica's symptoms, it is hard for anyone to have peace
and quiet.
``If I'm having a bad night there's no place for me to go,'' she
says. ``I need a place where I can just move around and make whatever
noise I need to.'' People affected with Tourette's syndrome describe
their impulses as similar to the need to sneeze -- it can be subdued
for only so long, then it finally comes out, no matter what you
do. Erica worries that her outbursts disturb her family and keep
them awake at night. Sometimes, she says, it takes her four hours
to stop jerking and fall asleep.
Erica would love to have a ``real bedroom'' of her own, which would
mean converting the family room where she currently sleeps into
an insulated, carpeted room ($250)
(7A) with a new door ($100)
(7B) and blinds ($45)
(7C) for the windows. A modest budget for some
frills ($75)
(7D) would give Erica a chance to put her stamp
on the place. If they could do the work themselves, they would,
says Delores, 68, but both she and her husband, 76, have health
problems that make that impossible.
A renovated room also would provide Erica with the privacy any
teen wants to get dressed, listen to music or just hang out with
friends. Erica loves country, R&B and rap. One day, she hopes
to become a choreographer.
Beyond a private space, Erica has another wish -- that people would
learn about Tourette's syndrome.
``Don't just stare at me,'' she says. ``If you're worried, come
up and ask me if I'm OK. I'd much rather people ask me questions.''
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