East Oregonian : E.O., October 17, 2017, Page Page 10A, Image 10

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OFF PAGE ONE
East Oregonian
SUSIE: ‘She was a lovely, lovely woman’
Tuesday, October 17, 2017
OKTOBERFEST: Some people came from a few hours away
Continued from 1A
Continued from 1A
student was someone everyone knew
and who liked helping others. Beers
had noticed her cruising around in
her wheelchair putting up posters
for Coats for Kids, a project of the
Associated Student Body for which
Susie was publicity coordinator.
Beers was stunned to learn of her
death.
“She was definitely the most
positive, strong person I’ve ever
known,” Beers said.
Her family is in shock. Susie’s
father, Mario Arroyo, said Susie
appeared upbeat and healthy at a
family dinner Thursday evening. Later
that night, they found her unconscious.
Susie would never get her heart
transplant. In 2013, though, she was
the first woman and only the second
person with Duchenne to have a heart
pump called a ventricular assist device
(LVAD) implanted in her chest to aid
in circulation of blood.
The pump was a game changer.
Her extremities warmed. Her gray
fingernails turned pink.
Susie forged ahead with school,
enrolling at Eastern Oregon University
with hopes of teaching school. She
graduated in 2016, but she would
never get her own classroom.
On Monday at Burns Mortuary in
Pendleton, family members gathered
to plan Susie’s service. They took a
break for tender recollections of Susie.
Sitting around a long table, her parents,
grandparents, brother and pastor talked
of a woman of faith who helped others
and was happy, despite her condition.
They will miss her activism, her spirit,
her smile, her peaceful heart.
“She left a big legacy,” said Pastor
Hugo Villalobos, of the Pendleton
Spanish Adventist Church. “She was a
warrior who fought to the end.”
After graduating EOU, Susie
wrote letters to the FDA urging
emergency approval of a promising
Duchenne drug called Eteplirsen, the
first drug ever for Duchenne patients.
In the winter of 2016, she flew to
Washington, D.C., to testify before
an FDA panel that the agency should
give accelerated approval for the drug
since people with Duchenne have no
other option. Eventually, the approval
came through on a conditional basis.
The Oregon Health Plan didn’t
automatically cover the drug, which
can run from $300,000 to $700,000
per year, depending on the weight of
the patient. So Susie traveled to Salem
to testify in front of the Oregon Drug
Utilization Review Board’s Pharmacy
and Therapeutics Committee.
Staff photo by E.J. Harris
Susie Arroyo laughs with registered
nurse Sally Bishop as Bishop pre-
pares an IV port last August at St.
Anthony Hospital in Pendleton.
She finally got temporary approval
and started getting weekly injections.
After six treatments, she noticed more
strength in her neck and arms.
Pat Furlong, founder and CEO of an
advocacy group called Parent Project
Muscular Dystrophy, called Susie a
pioneer.
“She was a lovely, lovely woman
who made us realize that girls have
Duchenne, too,” said Furlong, who lost
two sons to the disease. “She bravely
went forward with the LVAD and
fought for access to treatment.”
Furlong, too, was shocked to learn
of Susie’s death.
“We all expected her to go on,”
she said. “You just felt like there was
something that would keep enabling
her to go on.”
Mario Arroyo Jr. marveled at his
sister’s life. Plenty of people make
excuses for why they can’t do things,
he said, but “despite the limitations she
had, look how much she was able to
accomplish.”
Around that table at Burns
Mortuary, family members switched
off telling me what they will miss most
about Susie.
“Her smile,” said Mario, Jr.
“Her service,” said her pastor.
“Her love for life,” said her
grandmother.
“Everything,” said her mother.
Tears built up in my eyes. I
swallowed hard. So much for
journalistic detachment. Some people
just lodge in my heart and I can’t do
anything about it.
Goodbye, Susie Arroyo. We won’t
forget you.
———
Kathy Aney covers human interest,
health and education for the East
Oregonian. Contact her at kaney@
eastoregonian.com or 941-966-0810.
“Oktoberfests traditionally
just have German beers,” he
said. “So for us to have all
these different craft beers is
pretty different.”
There were beers from as
far away as Corvallis, Eugene
and Astoria and Ellensburg,
Washington.
The event also featured
food from the Pendleton-based
Hill Meat Company, Barhyte
Mustard and Rolling Stone
Bakery. Proceeds went to
several local organizations,
including the Pendleton Swim
Association, the Lions Club
and the City Club.
“The first year, we were
scared because we didn’t
have any money,” said board
member Niki Naughton. “But
local companies like Hill Meat
were so excited when we came
to them. Same with Barhyte.
The first year we had the event
paid for with sponsors, and
made money with the ticket
sales.”
Naughton estimated that
in the last three years, they’ve
averaged about $10,000 in
annual donations, but hoped
they would increase that
number this year.
Naughton said they were
hoping to making it a “heads
and beds” event, attracting
visitors from out of the area.
Tony Zubiria, owner of
Mario’s Basque Bar B-Q,
said this was only his second
year at the event, but he was
looking forward to a good
turnout, especially with the
nice weather.
“We’re selling a Basque
sandwich called Solomo,” he
said, describing the dish from
northern Spain. “It’s real pork
loin with roasted red pepper.”
Some people came from a
few hours away.
Terry and Julie Erntson
enjoyed a “Benedict Cumber-
batch” Gose from Buoy
Beer Company in Astoria,
and a dry cider from Blue
Mountain Cider Company in
Milton-Freewater.
“This is our first time
here,” Julie said. “We are from
Ontario, and we were passing
through and thought we’d
stop.”
Gary, Sharon, Brandon
and Diana Hayden came from
Hermiston and the Tri-Cities,
and enjoyed the unique flavors
of beer they found.
“I never would have thought
cucumber would be good in a
beer,” Diana said of the Bene-
dict Cumberbatch Gose. “It’s
surprisingly good.”
———
Contact Jayati Ramakrishnan
at jramakrishnan@eastorego-
nian.com or 541-564-4534
FIRE: Strike team expected to be deployed for 14 to 21 days
Continued from 1A
south late Saturday along with
four other Oregon strike teams
deployed by the Oregon State
fire marshal. The Umatilla/
Union team is staged in Chino,
California, to fight one of the
state’s wildfires. Fires further
north near Sonoma have killed
more than 40 people and drawn
in dozens of strike teams from
other states.
“We send firefighters to
Washington state on a pretty
regular basis, or into southern
Oregon, but things have to get
pretty bad in California for them
to send for help,” Pendleton
Fire Chief Mike Ciraulo said.
A few weeks ago it was
Oregon that needed the
help, as the Chetco Bar fire
burned almost 200,000 acres
in southwestern Oregon and
another blaze swept across
the Columbia Gorge. Ciraulo
said his department has sent
personnel out to help fight
nine different fires in the
Northwest this summer, and
Umatilla County Fire District
has deployed to a number of
out-of-district wildfires as well.
Ciraulo is a wildfire incident
commander for the state and
said there were times they
asked for help that other states
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couldn’t send because they
were already dealing with too
many fires of their own.
“This is probably one of the
busiest seasons we’ve seen in
recent years,” he said.
Umatilla
County
Fire
District operations chief Jim
Forquer said the frequent
mutual aid deployments is a
“testimony to the extreme fire
season” the country is having.
California firefighters have
already been up in Oregon
fighting the Chetco Bar fire, he
said, so it was only right that
Oregon would be willing to
turn around and help them.
One thing non-firefighters
can do to help is keep the
local fires to a minimum
by remaining cautious and
remembering that vegetation is
still dry despite burn bans being
lifted.
“I’d just remind folks to be
safe out there,” he said. “Don’t
leave fires unattended.”
Ciraulo said that fire districts
and departments are paid for
sending personnel to assist in
wildfire responses like the ones
in California, so Pendleton,
Hermiston
and
Stanfield
taxpayers are not footing the
bill for the strike team’s travel
to Chino — in fact, it creates
“a little bit of revenue” for the
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department.
Beyond the question of
money, however, Ciraulo said
firefighters from different states
being willing to help each other
out is just the morally right
thing to do. And the personnel
who have a chance to fight fires
alongside teams from other
states in different terrains come
back more experienced, with
new ideas.
“It’s a win-win for
everyone,” he said.
The Oregon State Fire
Marshal’s office said in a
statement that the department is
“extremely grateful to Oregon’s
fire chiefs and their agencies for
again stepping up to the plate to
help our neighbors to the south
as they continue to struggle
with an unprecedented amount
of fires on their landscape.”
The Umatilla/Union strike
team is expected to be deployed
for 14 to 21 days, not including
travel. Updates on their deploy-
ment are available on the Pend-
leton Fire & Ambulance and
Umatilla County Fire District
#1 Facebook pages.
———
Contact Jade McDowell at
jmcdowell@eastoregonian.
com or 541-564-4536. The
Associated Press contributed to
this story.
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