BAKER CITY HERALD • SATURDAY, JUNE 25, 2022 A5
REGION
A family’s lives changed in an instant
knows her shapes, alphabet, colors
and animals, though she struggles
with balance and speaking clearly.
Every seizure knocks her back de-
velopmentally, and she must slowly
make her way forward again.
“Her speech is probably behind
her comprehension,” Todd said.
“You can see her counting, recog-
nizing letters. Telling you what she’s
thinking, she struggles with that.
She gets frustrated with that, too.
We can see her getting frustrated
with us.”
“The St. Anthony’s therapy team
has been amazing, and we appreci-
ate all they are doing for her,” Deona
said. “She is making progress.”
BY KATHY ANEY
East Oregonian
PENDLETON — Morrow County
sheriff’s deputy Todd Siex stiffened
as a call crackled over the radio in
his police pickup. The dispatcher re-
ported a baby was having a seizure at
a Lexington residence.
Siex (pronounced “Six”) checked
the location on his mobile computer
and saw the address was his home,
where he lived with his wife, Deona,
grown daughter, Lindsey Hodges,
and his 11-month-old granddaugh-
ter, Oakleigh. His stomach in a knot,
he drove from Irrigon to Pioneer Me-
morial Hospital in Heppner to meet
the ambulance carrying the little girl.
Earlier that morning, it had been
a normal day inside the house. Until
it wasn’t.
It was Dec. 8, 2019, and Deona
prepared the home for the baby’s first
Christmas. Oakleigh had come into
the world as a seemingly normal,
healthy baby girl on Dec. 28, and
the family imagined a magical hol-
iday with the child. Lindsey just re-
turned home from her job as kitchen
lead at Heppner Elementary School.
Her mother cleared off the top of an
armoire for decorations. Oakleigh
stood in the playpen happily observ-
ing.
Then the baby toppled over and
lay still. The women rushed to the
playpen.
“She was face down and unrespon-
sive,” Hodges said.
The initial stillness erupted into a
seizure that would continue for more
than an hour and launch a medical
nightmare that persists two-and-a-
half years later.
“We were all so scared, and it
seemed like time was standing still,”
Deona said. “Oakleigh was having a
grand mal seizure and they could not
get her to stop seizing.”
Survival and diagnosis
She said medical personnel at the
Heppner hospital struggled to intu-
bate the thrashing baby girl. Deona
rode along on the medical transport
plane to Doernbecher Children’s
Hospital in Portland, while Todd
and Lindsey drove there in Todd’s
personal pickup. Inside the airplane,
the crew worked to keep the baby
alive.
“When we arrived at the pediatric
intensive care unit at Doernbecher
Hospital in Portland, Oaks was in
bad shape, barely hanging on,” De-
ona said. “She was dehydrated, she
wasn’t getting enough oxygen, and
Kathy Aney/East Oregonian
Umatilla County sheriff’s deputy Todd Siex sets his granddaughter Oakleigh down June 11, 2022, after holding her for a minute.
Oakleigh, who has Dravet syndrome, is in constant motion.
her little body was becoming hypo-
thermic on top of everything else.”
As medical personnel at the hos-
pital worked to stabilize the baby,
she went into cardiac arrest. Code
blue. CPR revived Oakleigh but her
condition remained unstable. Lind-
sey signed permission to connect
the baby to a machine that pumped
blood outside the body to remove
carbon dioxide and bring back ox-
ygen-rich blood. Though Oakleigh
rallied, an MRI showed she had suf-
fered a stroke during the procedure.
The family made it home for
Christmas that year, but they were
shaken. The little girl continued to
experience periodic seizures and her
neurologist eventually diagnosed the
baby with Dravet syndrome, a sei-
zure disorder that generally begins
in the first year in otherwise healthy
infants and affects an estimated 1 in
15,700 individuals. It was a difficult
diagnosis. June is Dravet Awareness
Month, a time when those affected
by the syndrome reach out and try to
describe their world.
Life can be nerve-wracking. A
rescue plan hanging on the family’s
refrigerator lists five chronological
things to do until Oakleigh stops
seizing. The plan is signed by her pe-
diatric neurologist at Oregon Health
& Science University.
“To whom it may concern,” the let-
ter starts.
The list starts with instructions
to give a nasal medication and call
911 if a seizure begins. If that doesn’t
work, the emergency medical techni-
cians have several more strategies to
try. Timing is critical.
Revolving life around
Dravet syndrome
More than two years since that first
attack, the family has become Team
Oakleigh. Last year, the trio moved
from their beloved Lexington to
Pendleton, where St. Anthony Hospi-
tal is better equipped and has quicker
access to Life Flight and Oakleigh
already had a pediatrician and ther-
apist.
They adjusted professionally as
well. Todd secured a job as a deputy
with the Umatilla County Sheriff’s
Office. Deona commutes to her job
with the Morrow County District At-
torney’s Office in Heppner. Lindsey
gave up her job in order to stay with
Oakleigh.
Recently, the three relaxed in their
new Pendleton living room and re-
flected. On the carpet, Oakleigh drew
Kathy Aney/East Oregonian
Oakleigh Hodges swings June 11, 2022,
in the backyard of her family’s Pendle-
ton home. Oakleigh, who has Dravet
syndrome, seemed a normal, healthy in-
fant until her first seizure at 11 months.
with giant Crayons. She giggled as
she stuck a sticker on Todd’s cheek
and he flashed her a silly smile. Then
she picked up her pink, sparkly iPad
and listened to “The Boom Boom
Song” for a while. Out in the yard,
she chased bubbles and cuddled with
her cat.
Life with Oakleigh offers a huge
dose of joy, they say, along with so
much worry.
The little girl, spunky, fearless
and outgoing, loves to color, swim,
be around animals and spend time
outside, running and squealing. She
In it together for Oakleigh
The onset of a seizure — which
hasn’t happened since February —
means all hands on deck and some-
times an ambulance ride, such as the
one during a visit to Portland last
November.
“That was the craziest ride,” Lind-
say said. “When we turned the cor-
ner, everything slid.”
The three adults form a phalanx
of sorts around Oakleigh, know-
ing they must be vigilant. No more
camping trips in the mountains.
Even driving to the Tri-Cities takes
planning.
“The morbidity risk of kids with
Dravet syndrome is very high,” Todd
said. “If you don’t act and you don’t
how to respond to it, her chance of
dying is very high.”
Lindsey said she worries she can’t
adequately convey how quickly one
must act when Oakleigh has a sei-
zure. She’s considering enrolling
Oakleigh in preschool but conver-
sations with providers leave her un-
sure. She wants to attend school with
her daughter in case of a seizure,
but hasn’t received encouragement
so far.
“They say, this is your time to have
a couple of hours to yourself,” Lind-
sey said.
“They think we’re being dramatic,”
Todd said.
The three adults know people just
don’t understand the complexities of
the disorder. Why would they? Un-
til that day three years ago, when the
call came crackling across Todd’s po-
lice radio, they didn’t either.
So they focus on Oakleigh and
revel in her take-no-prisoners atti-
tude about life.
“Oakleigh is truly our little mir-
acle,” Deona said. “She is such a
fighter.”
Oregon gubernatorial candidate
Johnson drops in on Hermiston
BY ERICK PETERSON
East Oregonian
HERMISTON — The
Eastern Oregon Economic
Summit brought some of the
state’s biggest political figures
to Hermiston, including gu-
bernatorial candidate Betsy
Johnson.
The unaffiliated candi-
date visited supporters Fri-
day morning, June 17, at The
Pheasant Blue Collar Bar &
Grill in Hermiston before ap-
pearing at the summit.
“Eastern Oregon is not, for
me, just a stop on a political
campaign,” she said.
She was a member of the
Oregon House of Represen-
tatives from 2001 to 2005
and the Oregon Senate from
2005 to 2021. Johnson said
she comes to the region reg-
ularly and has advocated for,
and produced for, the area a
great deal.
“Hill Meat (Co.) now has
bacon available in the Port-
land metro market because
I flew the director of the De-
partment of Ag and the gro-
cery industry out and advo-
cated for them to have shelf
space,” she said.
She added she has
promoted air service,
including drones, in
Pendleton and worked
to support a partnership
between Blue Mountain
Community College and the
Pendleton Round-Up, which
trained veterinary assistants
and technicians. She said she
has brought other legislators
to the area to promote the
work of the Port of Morrow
and other activity in Eastern
Oregon.
She added she has stood
with Eastern Oregon legisla-
tors on their interests.
“I have had a real relation-
ship with Eastern Oregon,”
she said.
Having flown into town,
she applauded recent im-
provements to the Hermiston
Municipal Airport, calling it
“one of the most beautiful”
fixed-base operators.
“And it’s nice to come out
onto the ramp, and they
Erick Peterson/East Oregonian
Betsy Johnson, gubernatorial candidate, holds up frames Friday, June
17, 2022, she said she has had for around 40 years. She said David
Drotzmann, Hermiston’s mayor and an optometrist, gifted her with
identical frames recently. Johnson was at The Pheasant Blue Collar
Bar & Grill to meet supporters.
know who we are. We bought
some gas to help out the air-
port,” she said.
She said she likes to con-
sider herself “a regular out
here.” Furthermore, she said,
“The town looks fabulous.”
She called it “clean,” “attrac-
tive” and “welcoming.”
“There seems to be a sense
of possibility here,” Johnson
said.
Local connections
Johnson said she knows
Hermiston Mayor David
Drotzmann, calling him “a
great American,” before shar-
ing and a “silly, little story.”
Johnson has made her
large eyeglasses a symbol of
her gubernatorial campaign.
The frames, however, “are
damned-near impossible to
find.”
According to Johnson, she
spoke with the mayor, busi-
nesspeople, the school su-
perintendent and other peo-
ple a month ago. During the
conversation, she said, she
mentioned her troubles find-
ing eyeglass frames to the
mayor. Soon after their talk,
Drotzmann, an optometrist,
sent her frames from some
“secret stash someplace,” she
said.
“I now have extras made
up, and I have one of them
made into sunglasses,” she
said. “He couldn’t have given
me anything that I would
have welcomed more, be-
cause they are impossible to
find.”
She said she was “over the
moon.”
Goals as governor and
getting on the ballot
Johnson said she wants to
make more local contacts, es-
pecially if elected governor,
so she could further help the
area and the entire state.
Oregon’s business interests,
she said, need help. She stated
they need to be protected
from excessive taxation and
regulation.
“I’m talking to too many
Oregonians who are saying,
‘We can’t stay here. Permit-
ting is too difficult,’” she said.
Johnson added the state
needs to promote business,
keeping the momentum of
successes.
Johnson was at The Pheas-
ant in part to add signatures
to put her name on the No-
vember ballot.
She said she has until
mid-August to obtain roughly
25,000 signatures.
“We will get many more
than that,” she said.
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