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16 | September 27, 2018 | The New Lenox Patriot NEWS
newlenoxpatriot.com
FROM THE TINLEY JUNCTION
TP mom to raise awareness for
daughter’s rare disease
In 2006 there were only 200
known cases of congenital central
hypoventilation syndrome worldwide.
As of 2008, that number had
increased to 1,000, according to the
U.S. National Library of Medicine.
A decade later, advocates still place
that number around 1,200.
Tinley Park native Laura Brown
and her husband Jeff’s 18-month
old daughter, Josie, is one of them.
She was born with a mutated
PHOX2B gene which medical researchers
have discovered helps
the body and brain regulate normal
breathing at the molecular level.
Effectively, Josie’s autonomic nervous
system fails to connect signals
that tell the lungs to pump oxygen.
Simply going to sleep can be fatal.
“There were unexplained periods
of respiratory distress where
she wasn’t breathing right,” Brown
recalled. “It was really scary.”
A “fighter” as described by
Laura, Josie was born five weeks
premature and spent close to five
of her first six months of life in
the Pediatric Intensive Care Unit
at Hope Children’s Hospital. A
forward-thinking doctor correctly
predicted Josie’s respiratory issues,
which at this point had required
the use of a ventilation machine,
could be CCHS. To bring awareness
of CCHS Laura has organized
“Jogging for Josie” in an effort
to raise $12,000 for the nonprofit
CCHS Network by partaking in the
Chicago Marathon on Oct. 7. The
number was doubled after reaching
her initial goal of $6,000, or $5 for
each of the 1,200 known cases.
“She’s one tough cookie — my
hero for sure,” Laura said.
Reporting by Cody Mroczka, Editor.
For more, visit Tin
leyJunction.com.
FROM THE MOKENA MESSENGER
‘Control beyond the grave’
The old Boy Scout motto, “Be
prepared,” can be applied to many
things in life, and can especially be
applied to death.
Contemplating one’s own mortality
can be an uncomfortable thing,
but facing the questions about what
would happen to those left behind is
essential to ensure that those loved
ones receive what one’s final wishes
wanted them to receive.
That’s why Skye Bergeson and
Richard Rappold held an estate
planning seminar at Mokena Community
Public Library District
Sept. 18. Bergeson is a financial
advisor with Edward Jones in Mokena,
and Rappold is an attorney
who lives in Frankfort and practices
out of Chicago.
According to Bergeson, an estate
plan should involve the services of
a financial advisor to help manage
assets, a tax professional to keep
an eye on the tax laws to make sure
those assets are protected under
ever-changing tax code, and an attorney
to help keep assets from being
bogged down in court and not
fulfilling one’s wishes in a timely
manner.
Any estate plan should be specific
to an individual, as everyone’s
circumstances and goals will be
different; however, the individual,
along with the estate planning team
of the financial advisor, tax professional
and attorney, should monitor
and re-evaluate the plan every six
months to a year, Burgeson said.
Reporting by T.J. Kremer III, Editor.
For more, visit Moke
naMessenger.com
FROM THE ORLAND PARK PRAIRIE
Friends, family rally around youth
with rare disorder
As a nurse, OP resident Mandy
Granat has devoted her professional
life to mitigating the pain and
discomfort of those in her care.
Most difficult of all was being
confronted by medical uncertainty
regarding her 11-year-old son,
Luke Granat.
When he was 8, Luke started to
exhibit symptoms like abdominal
pain.
“We spent about a year having
him be misdiagnosed,” Mandy
said. “They thought it was allergic
reactions.
The severity of the reactions intensified.
After a series of complex
blood tests, doctors discovered that
Luke suffers from a rare genetic
blood disorder called Hereditary
Angioedema.
“I never even heard of it,” Mandy
said.
On average, only about one in
10,000-50,000 people suffer from
HAE.
In May, Mandy and Luke traveled
to Vienna, Austria, to attend a
patient and doctor symposia.
Luke also is a member of the
Youth Leadership Council for the
USA HAEA. In July, he appeared
at Capitol Hill to advocate for increased
federal funding for the disease.
The family also has sought to
raise awareness closer to home. In
2017, the family held a 5K run in
Danada Forest Preserve in Wheaton.
Nearly 30 people turned up.
The family held another event
this August. Mobilizing Facebook
and other social media to shape
word of mouth around Orland
Park and Tinley Park, the number
jumped up to 130 this year.
“He needs the support of his
friends more than anything at this
stage,” Mandy said. “The event
made him feel so good.”
Reporting by Patrick Z. McGavin,
Freelance Reporter. For more, visit
OPPrairie.com.
FROM THE FRANKFORT STATION
Frankfort library program
addresses healthy habits
It is a disease with no cure and
no prevention, but it is not without
hope.
Hadi Finerty, of the Alzheimer’s
Association, met with seniors Sept.
13 at the Frankfort Public Library
District to address the scary reality
of Alzheimer’s and dementia.
Finerty said most times she gives
the presentation, attendees want to
know if they will get the disease or
if they already have it.
The thing is, sometimes there is
not a definite answer to their questions.
While family history and genetics
can play a part in determining
whether someone will be diagnosed
with Alzheimer’s or another
form of dementia in their lifetimes,
just because someone is genetically
predisposed to get the disease
does not mean they will.
Instead of dwelling on statistics
and worrying about it, Finerty said
it is important for people to talk
about it and learn as much as they
can.
The general effects of aging
can make it hard to recall details
like names, places or words, but
in most cases people eventually
remember those things if it is just
age-related forgetfulness. With Alzheimer’s
and dementia, she said,
it is different.
Reporting by Amanda Stoll, Assistant
Editor. For more, visit FrankfortStation.com.
FROM THE LOCKPORT LEGEND
Light pole falls on, injures three
Butler School students
A light pole fell and injured three
fourth-grade students after striking
them while they were at recess
Sept. 17 outside Butler School,
according to Homer Community
Consolidated School District 33C.
The district posted a message on
its Facebook page Monday afternoon
stating that all three children
were evaluated at a local hospital
and were “okay.”
Homer 33C Superintendent
Craig Schoppe said the incident
happened at approximately 11:40
a.m. in front of the school.
“The district’s first concern is the
safety and well-being of our students,”
the district said in a statement,
which was provided to The
Horizon on Sept. 19. “Due to the
fact that this involves individual
students, and we are currently investigating
the incident, the district
has no further comment.”
Jeff Scellato, of Lockport, is the
stepfather of one of the children,
Peyton Forrest, who was injured by
the light pole. He said Forrest was
coming out of a door to recess and
observed three children standing
on the base of the pole, and Scellato
said Forrest told him a teacher
told those children to get off.
Forrest was standing further
away from the pole when it then
came down and hit him in his back,
according to what he told Scellato.
The 9-year-old suffered a fractured
rib as a result and was transported
via ambulance to Silver
Cross Hospital, as were the other
two children, Scellato said.
“Thank God no one was killed,
a teacher or student or anybody,”
Scellato said.
Reporting by Thomas Czaja, Contributing
Editor. For more, visit LockportLegend.com.
FROM THE HOMER HORIZON
Man charged for anti-Muslim
vandalism in Homer Glen
A man has been charged for vandalizing
a sidewalk with Islamophobic
graffiti Sept. 17 in front of
a Muslim family’s Homer Glen
home, according to a Sept. 20 release
from the Will County Sheriff’s
Office.
Patrick J. Goshorn Jr., 26, of
13057 Finch Court in Homer Glen,
was charged with one count of felony
criminal damage to property
and one count of felony criminal
damage to state-supported property
by the sheriff’s office. The case
was turned over to the Will County
State’s Attorney’s Office for review,
and the office announced
additional charges of a felony and
misdemeanor count of criminal defacement
to property and one count
of a hate crime, bringing the total
to five charges.
One of the homeowners originally
called police about 8 p.m.
Sept. 17 after discovering the graffiti
outside their home in the 13000
block of W. Sparrow Court, according
to Will County Sheriff’s Office
spokeswoman Kathy Hoffmeyer.
In addition to the graffiti —
which mocked the common Muslim
phrase “peace be upon him”
with an obscene variation — the
taillights, trunk and bumper of the
homeowners’ vehicle, a 2013 Toyota,
were covered in brown spray
paint, according to Hoffmeyer.
After appearing in video court on
Thursday, Sept. 20, Goshorn had
his bond set at $100,000, with 10
percent to apply. A condition of his
bond states that if he is able to bond
out, he will be released with an electronic
monitoring device and will
not be allowed to be within 3,000
feet of the vandalized home.
Goshorn’s next court date is set
for Oct. 11.
Reporting by Thomas Czaja, Editor.
For more, visit Homer
Horizon.com.