A8
FROM PAGE ONE
East Oregonian
Saturday, September 4, 2021
Providence:
HOW TO HELP
For more about Providence
and the gene disorder, visit:
www.FRRS1L.ORG
Instagram: Hope4frrs1l
Facebook: Finding Hope for FRRS1L
Continued from Page A1
The campaign was launched at
6 a.m. Aug. 22. By 6 a.m. the next
day, less than 24 hours after the
fundraiser began, that fi rst $100,000
had been committed. Within fi ve
days, on Aug. 27, donations totaled
more than $200,000 and as of
Sept.1, some 649 donations totaled
more than $281,000.
Miranda said that one of the fi rst
contributions was a $10,000 pledge,
but every “$20 donation” is appreci-
ated. The largest donation has been
$20,000.
“All we want to do is fi nd a cure
for these babies,” she said.
Meanwhile, Minassian has
contacted a group of scientists in
Germany who recently completed
a promising study specifi cally on
FRRS1L gene replacement therapy
in mice. Minassian was optimistic
and the parents were ecstatic.
Hope
Miranda Rector/Contributed Photo
Providence Rector sleeps after an
MRI during her admission at Sacred
Heart Children’s Hospital in Spo-
kane in November 2018. Because
patients must stay extremely still
during an MRI, she was put to sleep
for the procedure. It was her second
MRI of the year.
Providence’s Journey
Providence turned 4 on Aug. 4.
Born without complications, at 6
months old she was unable to sit on
her own or hold her head up. She
was considered developmentally
delayed.
Miranda started a Facebook
album and Instagram account for
Providence to track her medical
journey, which has included eight
hospital stays. Twice this spring she
spent 16 and then 17 days at Oregon
Health & Sciences University in
Portland.
The infant was improving, albeit
slowly, and by the time she was 1
year old, Providence was support-
ing herself sitting, her head control
improved, she was eating softer
foods like steamed veggies and
she was army crawling around the
Rector’s home in Hermiston.
“That fi rst year she was crawl-
ing, eating toast, blowing raspber-
ries. She laughed and would grab
and pull herself up,” Jason said.
During a month-long trip to
Colorado just after Providence
turned 1, her aunt, a former special
needs and preschool teacher,
noticed the baby staring off into the
distance. She suggested Miranda
and Jason get her tested.
At Sacred Heart Children’s
Hospital in Spokane, an MRI came
back normal, but an EEG showed
Providence was having “absence
seizures,” which cause lapses in
awareness. They are a type of gener-
Miranda Rector/Contributed Photo
Providence at 14 months old smiles with her dad, Jason Rector of Hermis-
ton, a month before her regression and excessive seizure activity starts.
alized onset seizure, once referred
to as petit mal seizures, meaning
they begin in both sides of the brain
at the same time. They begin and
end abruptly but can last up to 30
seconds — so brief they sometimes
are mistaken for daydreaming and
may not be detected for months.
An epilepsy medication, Keppra,
was prescribed with hope to help,
but after a few weeks seizures
progressed.
Doctors ran another EEG, did a
lumbar puncture and more MRIs.
They poked and prodded Provi-
dence. They did what seemed to be
an inordinate amount of bloodwork.
With a second medication, ONFI
(a benzodiazepine used along with
other medicines to treat seizures),
Providence showed improvements.
“I thought we were on the
right track,” Jason said. “Then the
seizures happened again, and it all
went downhill from there.”
Providence started struggling to
drink from a bottle. Doctors — and
the Rectors — realized even higher
doses of ONFI weren’t working.
“If anything, Providence started
becoming more lethargic, sleepy
and like she was in a haze,” her
mother said.
The parents consulted a feeding
therapist at Kadlec Medical Center
in Richland, Washington, and in
December, just before Christmas,
Providence was admitted to OHSU
for a gastrostomy-jejunostomy tube,
which passes through the abdomi-
nal surface, into the stomach and
down into the second part of the
small intestine.
The family returned home, but
on Christmas Day, Providence was
readmitted to OHSU with more
seizures and respiratory distress.
Over the next four months, she
returned to OHSU four more times
for the same issues.
On Feb. 19, 2019, Providence
was diagnosed with EEIE-37. By
March, she had totally regressed.
She had lost all physical abilities.
Providence no longer could
play with her toys, move her arms
or legs on purpose, and she had no
head control. She was eating only
through the J-G tube. She also
developed strider and laryngoma-
lacia, essentially losing muscle tone
in her throat.
Medical equipment started
stacking up. She was prescribed a
Nebulizer, electric suction machine,
ventilator for CPAP use, medical
chairs, oxygen tanks and more.
In May 2019 she had surgery for
a gastrostomy tube, a more perma-
nent feeding tube that connects
directly to her stomach, and a
supragottoplasty to remove tissue
from her throat to help reverse the
strider and laryngomalacia.
After the surgeries, Provi-
dence further regressed. Among
other things, she has cortical
vision impairment, meaning she
has diffi culty controlling her eyes.
Her vision is currently around -15
corrected to a -12. She has been
on seven different anti-epileptic
medications; none have completely
stopped the seizures from breaking
through.
So now Providence relies on her
parents for everything.
Miranda and Jason, both 33,
didn’t know what normal was when
Providence was born.
“We heard comments … ‘she’s
not holding her head up; you might
want to get her checked out,’”
Miranda said. “We took her to a
pediatrician who told us some kids
take longer than others. ‘Give it six
months,’ and that’s what we did.”
Miranda and Jason questioned
their parenting skills.
“We thought it was our fault …
we didn’t put her on her tummy
early enough or get early interven-
tion soon enough,” she said. “Now
four years into this, there’s noth-
ing we could have done that would
change where she is right now.”
“I specifi cally remember doctors
telling us, ‘Her condition is progres-
sive. The studies say that quality
of life is unknown but not good,’”
Miranda said,noting that most chil-
dren with EEIE, also known as
Otahara Syndrome, don’t live past
the age of 2.
The chance that gene replace-
ment could change Providence’s
quality of life is what her parents
hope for.
“There are no words,” Miranda
said. “To even dare fathom the idea
that our daughter might have some-
what of a normal life. The possibil-
ity of her walking, even holding her
head up on her own. Even a frac-
tion … that would be a huge bless-
ing that could expand her quality of
life. That’s been the prayer since she
started regressing.”
“This new gene therapy could be
the light at the end of tunnel,” Jason
said, “even if it could just stop the
seizures and let her smile.”
Successful gene therapy could
also save their marriage.
“It’s been rough on our family,”
Miranda said.
For the last six months, Miranda
and Jason have seen each other as
little as 15 minutes a day — from
the time she returned home from
work at 1:30 p.m. to when he had to
leave at 1:45 p.m.
“We literally live on a schedule,
her schedule,” Miranda said.
Miranda doesn’t hide the fact the
relationship between she and Jason
has been strained. She noted there
are 84% more divorces for parents
of special-needs children.
Jason agreed with Miranda’s
assessment that their marriage is
“on a thread.”
“I don’t know the future,” he
said, “but it’s not uncommon.”
If gene therapy works, that
would be fantastic. If it doesn’t, the
Rectors know Providence’s future
– maybe not their own.
“We love Provi exactly where
she’s at right now. Our love is vast.
If this is how it will be for the rest
of her life, we’ll love her no matter
what,” Miranda said.
In the meantime, with funds
being raised and a doctor eager
to fi nd a cure, Miranda and Jason
Rector will be hopeful. “I know
there’s a child in there who knows
what’s going on,” Miranda said.
“She’s just stuck in a body that
doesn’t respond.”
Workers:
Continued from Page A1
Hard time
During a year of record job
growth in Oregon, employers
like Keatman have had the
hardest time fi nding workers
to fi ll positions. Companies,
particularly in the leisure and
hospitality industries, across
the state are scrambling to
fi nd workers.
The hospitality, hotel,
restaurant and tourism-re-
lated industries added 6%
more jobs this year, econ-
omists say. Hiring is more
competitive than ever as
employers raise wages, off er
signing bonuses, referral
bonuses, improved benefi ts,
even subsidies for housing.
But those incentives also
have to compete against
federal unemployment bene-
fi ts, an increase in household
income from federal stimulus
funds and retirements.
Just ask Robin Clem-
ent, co-owner of Monkless
Belgian Ales in Bend. Clem-
ent and her husband opened
their pub just four months
before the pandemic shut it
down to reduce the spread of
COVID-19.
Fast forward to July when
tourism season in Central
Oregon hits a high note and
the state is reopening as
COVID-19 cases wane, the
Clements are scrambling to
get enough workers to keep
the brew pub open six days
a week.
In an interview with an
out-of-town worker recently
seeking a lead prep cook
position, Clement said she
made an off er on the spot to
the worker. The applicant
dined with his family for
dinner that night.
But the next day, he told
herClement he took another
position. because it The job
he took off ered slightly more
money and a leadership role,
something the small pub
couldn’t off er, Clement she
said.
“It was really disappoint-
ing, but par for the course.
He was one of the few inter-
views that I set up who actu-
Dean Guernsey/The Bulletin
A help wanted sign at Einstein Pros Plumbing Heating Cool-
ing Service Co. in Bend seeks workers with a starting off er of
$20 per hour.
ally showed,” Clement said.
“2020 was a cake walk
compared to 2021.
“Customers have little
grace. Their patience is thin.
It’s been hard dealing with
expectations.”
Tough spot
Only 32,500 eligible
workers statewide are sitting
out the labor market waiting
for the pandemic to lift, who
may have health concerns
or child care issues, said
Gail Krumenauer, Oregon
Employment Department
economist. And another
12,000 workers statewide,
who had been in the leisure
and hospitality industry,
now are working in the
transportation/warehousing
and delivery sector because
of higher wages and bene-
fi ts, Krumenauer said. The
average wage for leisure and
hospitality in Oregon is about
$14 an hour but in transpor-
tation/warehousing it’s $18 to
$20 an hour.
“That’s a tough spot to be
in. The hiring is 1-1/2 times
greater than we’ve ever
seen,” Krumenauer said.
“This spring we had 98,000
job vacancies, that’s a lot of
what is fueling the worker
shortage.
“That’s a perfect storm:
a lot of things happening all
at once and it makes it hard
for employers. Everyone’s
hiring. “
Layer these events on
top of one another and
mix in pent up demand for
buying and traveling and
the demand on goods and
services increases, which in
turn increases demand on
the need for more workers,
Krumenauer said.
“Expa nded benef its
helped families in Central
Oregon and nationwide keep
food on the table and a roof
over their heads when work-
ers lost their jobs through no
fault of their own during this
public health pandemic,” U.S.
Sen. Ron Wyden, D-Oregon,
said in an email. “Research
has repeatedly debunked the
baloney that benefi ts discour-
aged work.
“What’s clear in my
conversations with Orego-
nians all over our state is that
the lack of child care, housing
costs, the unique challenges
of service industry work and
other factors are what’s really
keeping many people from
returning to the workplace.”
Going down
T he u ne mploy me nt
rate in July was 5.6% in
Deschutes County, lower
than the double-digit rates
at the height of pandem-
ic-related closures, but still
above February 2020 when
it was 3.3.%, according to the
Oregon Employment Depart-
ment monthly unemployment
fi gures. Crook and Jeff erson
counties too have seen their
unemployment levels return
to near normal levels in the
months following the busi-
Dean Guernsey/The Bulletin
Robin Clement and her husband, co-owners of Monkless Belgian Ales in Bend, opened the
pub just four months before the pandemic shut it down to reduce the spread of COVID-19.
ness closures imposed to
slow the spread of the virus.
Crook County’s unem-
ployment rate was 7% in July,
compared to 4.4% in Febru-
ary 2020. And Jefferson
County’s unemployment rate
was 6.5% in July, compared
to 4.1% in February 2020.
In Eastern Oregon, Baker
County’s unemployment
rate was 5.4% in July 2021,
compared to 8.7% the prior
July. Union County’s unem-
ployment rate was 5.8% in
July 2021, down from 9.4%
the prior July. Wallowa
County’s unemployment rate
was 5.4% in July, compared
to 8.3% the previous year and
Umatilla County was 5.5% in
July 2021, down from 7.3% in
July 2020.
Statewide the unem-
ployment rate was 5.2% in
July, just slightly below the
national unemployment rate
of 5.4%.
“There’s no doubt that
(the federal boost of the
unemployment insurance)
is constraining the supply of
labor,” said Damon Runberg,
Oregon Employment Depart-
ment regional economist.
“But I don’t think it is to a
signifi cant degree.
“The labor market will
likely ease some as we move
into the fall, but that will be
more a refl ection of a reduc-
tion in job vacancies rather
than a massive inf lux of
workers who lost their federal
unemployment insurance
benefi ts.”
Reporter: 541-633-2117,
sroig@bendbulletin.com
CONCEALED CARRY
PERMIT CLASS
SATURDAY
SEPTEMBER 11 TH
Hermiston
Ranch & Home
9AM
&12PM
CLASSES
Multi-State $ 80
Oregon Included No Fee
Oregon Only $ 45
MULTI-STATE
Valid 35-States, including Washington
Shaun
Shaun Curtain
Curtain 360-921-2071
360-921-2071
or or email:
email: ShaunCurtain@gmail.com
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