LIHU’E – When Joanne Streeter’s son Cody was diagnosed with Fragile X Syndrome, the leading hereditary form of mental retardation, a psychiatrist recommended institutionalization. From the start, that was never an option for Streeter, a single parent. Her son should
LIHU’E – When Joanne Streeter’s son Cody was diagnosed with Fragile X Syndrome,
the leading hereditary form of mental retardation, a psychiatrist recommended
institutionalization.
From the start, that was never an option for
Streeter, a single parent. Her son should be at home “with the family, where he
belongs,” Streeter said.
Institutionalization could have stripped Cody of
his creativity, his friends, his schooling and his ability to use the bathroom,
eat, cry, laugh and run by himself, she said.
Learning three years ago that
the disorder was affecting Cody’s health was “devastating,” said Streeter. But
with the help of Hale ‘Opio Kaua’i Inc. therapeutic aides who work with Cody in
the family’s Wailua home around 20 hours a week, institutionalization has been
avoided.
“Hale ‘Opio has been a terrific help,” Streeter said. All of the
therapeutic aides have been “outstanding,” she said, working with her son on
specific goals in a structured home setting.
“It makes life easier,” she
said.
Streeter, who hadn’t heard about Hale ‘Opio before, now knows it is
a good thing to let people know about the agency’s services.
In classes at
Kapa’a Elementary School, Cody focuses on life skills training, also in a
structured environment. His mother would prefer more emphasis on
academics.
Streeter never went through the “Why me?” questioning or guilt
at potentially passing on the syndrome to her son. She was told about it, and,
because of “the Japanese in me,” knew she simply had to deal with it.
Once
she found out that Fragile X Syndrome was causing the normal-looking Cody to
have seizures, act up in public and embarrass his older and younger brothers,
she couldn’t get enough information about the condition.
When certain
medical professionals didn’t know what was causing Cody’s problems, before the
definitive diagnosis, or didn’t know what Fragile X Syndrome was, that fueled
her educational and research efforts.
Through her research, she found out
that 80 to 90 percent of Fragile X Syndrome sufferers are either undiagnosed or
misdiagnosed, even though a simple DNA (deoxyribonucleic acid) test can
identify the absence of a single protein that causes the condition.
That
single protein has been synthesized in a laboratory, and now researchers are
working on a way to place that protein into the human body or activate the gene
so it can produce the protein itself, Streeter explained.
Hereditary and
not always evident at birth, Fragile X can be passed on to two or three
children at birth, long before a couple even knows they have it, she said. Any
people who fall into the autistic spectrum should be tested, she added.
If
a female carries the trait, there is a 50-50 chance of passing it to her
children. If the male is the carrier, he passes it to his daughters.
Once
Streeter learned Cody suffers from Fragile X, she quickly gained information
and access to different strategies for his care.
“Something’s just not
clicking, hooking up, and most of the time there’s nothing you can do about
it,” said Mary Lou Barela, Hale ‘Opio executive director, talking about the
neurological disorder that is Fragile X Syndrome.
“A cure will be found,”
Streeter asserted.
Streeter, whose sons have had a hard time dealing with
some of Cody’s public seizures, has formed ‘Aha Hui Fragile X, a Kaua’i-based
support organization for those whose family members are impacted with Fragile
X. She is also may start a sibling support group for others going through the
same feelings Cody’s brothers endure.
Never has Streeter pitied herself or
cried out for help, she said. What she does, she does for her son, and others
who suffer from Fragile X.
“I’d go on, anyway. I’m a mom. That’s the
bottom line,” she said.
“We’re on the brink of finding a cure, but that’s
just icing on the cake,” she said. The coming cure is why she advocates so
strongly for research.
Her advocacy effort has been joined by U.S. Sen.
Daniel Inouye (D-Hawai’i), who has championed Fragile X legislation in
Washington, D.C.
“It’s way bigger than Cody,” Streeter said. “So many
families are struggling, and they don’t know why. Somebody has to speak up
about it.”
Staff Writer Paul C. Curtis can be reached at [
HREF=”mailto:pcurtis@pulitzer.net”>pcurtis@pulitzer.net] or 245-3681 (ext.
224).
