OP_092718

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The orland park prairie | September 27, 2018 | 5
Friends, family rally around youth with rare blood disorder
Patrick Z. McGavin
Freelance Reporter
As a nurse, Mandy Granat
has devoted her professional
life to mitigating pain and
discomfort of those placed
in her care.
Most difficult of all was
being confronted by medical
uncertainty regarding her
own son, Luke.
Luke, now 11, has always
been a naturally buoyant
child with an easy and outgoing
personality. When he
was 8 years old, Luke started
to exhibit symptoms, such as
abdominal pain and nausea,
that confounded doctors, as
extensive hospitalizations
and tests failed to identify
the underlying causes.
“We spent about a year
having him be misdiagnosed,”
Mandy said. “They
thought it was allergic reactions.
As a nurse, it made
sense at the time. When he
had the abdominal pain, he
spent five days at Hope Children’s
Hospital and the tests
came back normal.”
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. A person’s
C1-inhibitor protein regulates
blood-based system
that fight disease, inflammation
and buildup.
“He’s missing the [CI-inhibitor]
protein in his blood
that his body doesn’t make,
or is deficient,” Mandy explained.
The family lives in Orland
Park. Luke is a sixth-grader
at Central Middle School in
Tinley Park. Mandy works
at the Silver Cross Hospital
emergency room in Homer
Glen. Luke’s father, Steve,
is the assistant principal at
Tinley Park High School.
Luke has a sister, Anna, who
is in eighth grade at Central.
His older brother, Stevie, is a
freshman at Andrew.
In May, Mandy and Luke
traveled to Vienna, Austria,
for five days to attend a patient
and doctor symposium.
“We met kids from all over
the world, and we learned
that many don’t have the
medication in those countries,”
Mandy said. “That
was a humbling experience
because we see how lucky
we are to have access to the
medication.”
Luke also is a member of
the Youth Leadership Council
for the US Hereditary
Angioedem Association. 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 the summer of
2017, the family held a 5K
run in Danada Forest Preserve
in Wheaton.
The initial affair proved
the jumping-off point. In
the first week of August, the
family held another event.
Mobilizing Facebook and
other social media to shape
word of mouth around Orland
Park and Tinley Park,
the number jumped from 30
last year 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.”
The support was overwhelming
for Luke.
“It meant a lot to me because
it’s important to know
they care about me and want
to help me get through this,”
he said.
Luke is bright and naturally
curious.
Soccer and medicine are a big part of 11-year-old Luke Granat’s life, as he holds a kit
containing needles and medicine to physically keep him going, and a soccer ball, which
emotionally keeps him going. JEFF VORVA/22ND CENTURY MEDIA
Several friends and teammates from Orland Park and Tinley Park participated in a 5K run
to support Luke Granat. PHOTO SUBMITTED
“I like to play with and
build LEGOs, the Avengers,
Jurassic World and anything
with a built-in mythical
[theme],” he said.
Luke’s sanctuary in the aftermath
of the diagnosis has
been to throw himself into
sports. Luke plays midfielder
for the Orland Park-based
Sting 2007 program.
“It’s just fun to play with
my friends,” Luke said. “It
keeps me active. It’s fun, and
my dad is a soccer coach. He
always helps me learn about
soccer. He helps coach my
brother’s team: the Bobcats.”
His passion is essential
for achieving the normal
rhythms of childhood.
“Some physicians discourage
playing sports,
[thinking] any kind of trauma
is a trigger you are able
to predict,” Mandy said.
“His doctor has said to do
whatever is normal for an
11-year-old boy as possible.
The one thing we try to control
are the episodes, because
the faster you treat them, the
shorter the recovery time.”
If family and sports are the
primary way Luke has come
to deal with his condition,
self-education and heightening
awareness has become
the family’s rallying cry.
Luke takes intravenous infusions
at home and is learning
how to stick himself, Mandy
said.
Despite the scarcity of the
impacted population, those
who deal with the consequences
of hereditary angioedema
have developed
an international community.
The Granat family has aggressively
stepped into this
vibrant network.
“The disease is technically
considered genetic, but nobody
in our family has ever
had it,” Mandy said. “It’s a
spontaneous genetic mutation.
It’s confusing and, as
our experience showed, nobody
really knew what was
going on. The past two years
we have done everything
possible to learn as much as
possible about the disease
because it goes untreated or
misdiagnosed.”
As Luke learns to cope
with the emotional and physical
ramifications of living
with HAE, he has learned
even the most glancing actions
have a profound impact.
The worst part is how
the random nature of youth
is sometimes taken away.
“There are things we have
to cancel at a moment’s notice,”
Mandy said. “He can
be fine one minute, and it
can happen out of the blue
— his eyes and face or any
part of the body starting to
swell.”
But his resolve and his resilience
have strengthened.
“My mom gives me the
inspiration to keep going
and do the things I do,” Luke
said.