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
pcurtis@pulitzer.net or 245-3681 (ext. 224).
