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August 14, 2002
Willow Glen, California Since 1992 |
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Photograph by Jacqueline Ramseyer
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Raising Awareness: Angie and Ron Giuffre met
through Little People of America in 1989 and
will celebrate their 10th wedding anniversary
this October.
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Willow Glen couple defies stereotypes
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I-chun Che
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Willow Glen resident Ron Giuffre doesn't
think being 4 feet 2 inches in height is a
form of disability. "I am just different," he
says matter-of-factly.
As a case manager for people with
disabilities at Agnews Developmental Center,
3500 Zanker Road, 39-year-old Ron feels he
can better understand people's needs because
of his own experience.
"Maybe because I am different in terms of
stature, I want to help people of
differences," Ron said.
When he was a baby Ron was diagnosed with
achondroplasia, a disorder that prevents the
proper growth of cartilage. Of the
approximately 250 syndromes that cause short
stature, achondroplasia is the most common,
although still rare at one in 26,000 births.
The diagnosis came as a surprise to Ron's
average-height parents and three older
siblings.
"My mother was worried because she didn't
have much understanding of dwarfism," Ron
said. "But with her faith in God, she knew
everything would be OK."
Ron's parents later learned that
achondroplasia is a spontaneous genetic
mutation that causes the shortening of all
long bones. Eighty-five percent of children
with achondroplasia are born to parents of
average height; only 15 percent of cases are
the result of heredity.
His parents didn't treat Ron preferentially
but were very supportive and taught him to
ignore those who made fun of him.
"If people ridicule or hackle me, they have
to deal with it themselves," Ron said. "That
doesn't bother me."
Despite his upbeat spirits, being a dwarf
isn't easy.
Ron had to install a pedal extension in his
Honda Accord. He has to have his shirts and
pants altered. He has to climb onto a chair
and in most cases, his legs swing in the air.
He also has to pray the sinks in public
restrooms are low enough to reach.
These challenges are, at best, inconveniences
for him, he said, but there are some things
one just gets used to. What was most
difficult for him was finding his identity.
"It is very hard to find your identity when
you are different from everybody else," Ron
said.
In 1988, to meet other people of short
stature, Ron joined the Bay Area chapter of
Little People of America, Inc. (LPA).
LPA is a nonprofit organization that provides
social services, career counseling and
medical information to people of short
stature and their families. Membership is
offered to people who are no taller than 4
feet 10 inches in height, as well as their
relatives and medical professionals who work
with individuals of short stature.
Since its establishment by actor Billy Bart
in 1957, LPA has become the world's largest
organization devoted to short-stature people,
with more than 6,000 members worldwide. The
Bay Area chapter has about 200 active
members.
In the LPA gatherings, Ron found not only his
identity but also his wife, Angie.
"It was love at first sight," Angie, 40, said
with a broad smile. "We had a lot in common."
Like Ron, Angie was born into an average-size
family and was diagnosed with achondroplasia.
Both have characteristics of achondroplastic
dwarfs: short limbs, a moderately large head,
an average-size trunk, a flattened nasal
bridge, bowed legs and short-fingered,
trident-shaped hands. Besides their physical
similarities, both had a hard time
assimilating into an average-size world
before truly accepting themselves.
Angie, who is 4 feet 4 inches high, said she
realized she was different at the age of 5
when some of her classmates teased her and
called her 'midget.' Although her brothers
would protect her, Angie learned to stand up
for herself.
"I soon became thick-skinned," Angie said.
"If you let everything bother you, you are
not going to survive. Just put a smile on
your face and hang on."
Her greatest challenge was finding a date.
"Everyone has physical and emotional needs,"
Angie said. "I felt left out when my friends
were having dates and I had no boyfriends."
But although LPA meetings are good social
venues, Angie didn't want to join the
organization.
"I was in self-denial," Angie said. "I
thought I was doing okay on my own until my
friends started to get married and have
families."
Angie joined the LPA in 1988 and married Ron
four years later. They have two children,
Christopher, 8, and Michael, 4.
The couple bought their house on Cheryl Way
in 1995.
They didn't remodel the house much except to
install a bathroom mirror several inches
lower. They can stand on a stool to use the
stove. And a Frigidaire washing machine with
a door that opens in the front saves them the
effort of digging into a top-loading washing
machine.
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Photograph by Jacqueline Ramseyer
Nice Commodity: A front-loading washing
machine has saved Angie Giuffre a lot of
headaches in doing her laundry.
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Overall, their house is not much different
from any other house in Willow Glen. A green
wooden door in the front yard gives the
one-story house a warm touch.
"I want to raise my children in Willow Glen,"
said Ron, who was born and grew up in the
area. "Willow Glen hasn't changed much in
terms of family values."
But Ron and Angie knew that they were taking
a chance to have children.
When Angie was pregnant with Christopher, the
couple had mixed feelings about the new life.
They were not worried the baby might be a
dwarf but were afraid it would die.
As achondroplastic dwarfs, both carry one
"average-size" gene and one dwarfism gene in
a particular location. As such there is a 50
percent chance that the child will inherit
one of each gene and therefore be an
achondroplastic dwarf like his or her
parents, since the dwarfism gene is dominant.
However, there is a one-in-four chance that
the baby will inherit both dwarfism genes,
and in that case, the child dies at birth or
shortly thereafter. No child with this form
of disorder has ever survived longer than two
years.
Thanks to modern technology, however, the
couple was relieved to see a healthy,
average-size baby on the ultrasound screen.
But when Angie was pregnant with Michael, she
was even more worried. She was 37. Women over
35 have higher chances of giving birth to
babies with birth defects and Down Syndrome.
Angie underwent many medical tests, including
amniocentesis, to make sure the baby was
healthy.
Michael seemed perfectly healthy when he was
born, but the doctor soon found that the boy
had a ventricular septal defect, which left
an opening between the lower two chambers of
his heart. The newborn also had coarctation
of the aorta, a condition in which the main
artery that carries blood from the heart to
the body is pinched or constricted.
When he was only 8 days old, Michael
underwent surgery at Stanford Hospital. Today
the only sign of the complicated surgery is a
faint scar below his left shoulder blade.
Two weeks ago was his regular heart checkup,
and everything still seems fine. Now Ron and
Angie just wish their 3-year-old boy was not
so energetic.
In the evenings, neighbors can often see Ron
ride his bike scooter to follow Christopher
on his giant bicycle and Michael on his red
tricycle. Sometimes they stop to chat with
neighbors. Sometimes they stop to observe a
bug Michael finds in the meadow. From a
distance, they look like a gang of three
children giggling and having fun.
Christopher is now the tallest one in the
family. When his friends ask him why his
parents are short, Christopher always
replies, "That's how God made my parents."
Angie and Ron will celebrate their 10th
anniversary in October. They plan a nice
weekend alone in Reno.
"I am really lucky to have a nice husband and
two good boys," Angie said. "I am
short-stature. But I am a also a mother, a
wife, a worker and a friend."
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