FROM PAGE ONE
WEDNESDAY, SEPTEMBER 8, 2021
Church:
Continued from Page A1
He said his young wor-
ship team, with members in
their 20s and 30s, are able to
relate to new families, made
up of people of similar age.
Their presence keeps ser-
vices active and creative,
and they even manage to
keep him young, he said.
Haight’s son, Clayton
Haight, is part of the youth-
ful renewal. As Hermis-
ton Assembly strategy and
development pastor, Clay-
ton is guiding the church
outside of its building.
Starting a few months
ago, he said, Hermiston
Assembly has been promot-
ing “house parties.” These
are gatherings of people
inside of homes, focus-
ing on prayer, family, and
fellowship.
He said, the world is a
diff erent place now. Busi-
nesses have changed.
Many of those businesses
that have not changed,
have failed. Churches also
must change to meet new
situations.
Bible studies in homes
always were a thing, Clay-
ton said. People have long
gathered in the homes of
other believers to pray and
discuss scripture. The dif-
ference between house par-
ties and Bible studies is that
the house parties are fuller
services. People who par-
take in them recognize
their place in their religion
as leaders and ministers in
their own right.
It is a small-group model
which can continue, even
if new rules are created to
govern action in the larger
church building.
“With house parties,
even if we see more limita-
tions, in place, like before,
these house parties can
continue to thrive in small
groups,” Haight said.
Clayton added, he wants
a church that is resilient,
that “leans into where cul-
ture is at.” He also wants to
fi nd the best way to serve
the community.
To date, Haight said,
there are six homes that
have served as house par-
ties. They have fi lled to
capacity, with 20 to 30
people.
Haight provides the
parties with guides. As a
Providence:
Continued from Page A1
Ben Lonergan/Hermiston Herald
Sen. Ron Wyden, center, waves to students at the Families
First Child Care Center during a tour Aug. 31, 2021, of the
Neal Early Learning Center in Boardman.
Care:
Continued from Page A1
Griggs also is the Board-
man Community Devel-
opment Association exec-
utive director.
She praised the Port of
Morrow for being a part-
ner, building the facil-
ity and bringing in other
partners, such as Board-
man Foods and Threemile
Canyon Farms.
Brian Maag, an owner
of Boardman Foods,
expressed the pleasure he
gets out of Family First.
He said he was blessed to
be raised in a happy, sta-
ble family, and he wanted
to give back to the com-
munity with a program
that assists the happi-
ness and stability of other
families.
“We’re in a capital-in-
tensive business that takes
a lot of machinery, equip-
ment and buildings to do,
but, at the end of the day,
the people are the most
important,” he said. He
said he wants to reinvest
in families.
He said Families First
is more than a babysitter;
it is an educational center.
If you can keep children
at grade level, they have
a better chance of success.
He said the center in gen-
eral and Brenda Profi tt,
director of Families First,
is doing an excellent job
of educating children.
Thomas J. Flaherty,
also an owner of Board-
man Foods, added he and
Maag are from a family
with a 100-year-old his-
tory in Oregon. They are,
he said, “Oregonians to
the core.” As such, they
care about the state and
the Boardman area, and
they like what they see in
Families First.
“This endeavor with
this child care center is
probably more fulfi lling
than anything we have
ever done,” Flaherty said.
Having gone through dif-
fi cult times, he is grateful
the Boardman commu-
nity had “stuck with” him.
He also said he appreci-
ates Debbie Radie, Board-
man Foods vice president,
whom he called a “mag-
ical woman who makes
things happen.”
Radie said, though
Families First started
in January, Boardman
Foods actually began car-
ing for workers’ families
17 years ago. Back then,
an after-school program
was started. In that pro-
gram, schools would bus
the workers’ children to a
Boardman Foods facility.
There, the children would
snack and do homework
while their parents com-
pleted their shifts.
COVID-19 increased
the need of the after-school
program, Radie said. With
schools closed, children
needed more supervision
and educational resources.
As a result, after-school
program hours were
extended.
The community spread
word of the after-school
program, Radie said.
Soon, people who were
not even employed by
Boardman Foods were
asking if they could enroll
their children.
Needing more space,
she received help from
the Port of Morrow, which
made available space in
their new facility. With
this as well as help from
Profi tt, she was able to
move forward with the
new space.
The
center
also
received assistance from
the Family First Preven-
tion Services Act. Wyden
and Sen. Orrin Hatch,
R-Utah, wrote the legis-
lation was to help people
aff ected by the COVID-19
pandemic.
This is important work,
said Varon Blackburn,
Threemile Canyon Farms
human resource manager.
“Last year, I had moth-
ers working at Threemile
Canyon
Farms
who
couldn’t come to work
because they didn’t have
a place for their kids,” he
said. He credited Radie for
solving this problem and
Marty Myers, visionary
Threemile general man-
ager, for seeking a solu-
tion to child care. Myers
died December 2020.
“There’s no place like
Families First here in
Boardman,” said Dan Dal-
toso of Umatilla Morrow
Head Start, which also
wants to off er its support.
There is a need for
physical
infrastructure,
Wyden said, but also a
need to help people. Child
care needs to be more
plentiful and aff ordable
and needs more programs
such as Family First. He
said this is not just an
urban issue, but also a
rural issue.
“Supporting kids is a
hugely important state-
ment about our values as
Oregonians,” Wyden said.
“We want to make sure
that the little ones in our
families are taken care of.”
Wyden
also
said
that is a moral and an
economic issue.
lepsy, progressive dyskinesis
(abnormal movements), devel-
opmental delay, poor muscle
tone, brain volume loss, and
gradual loss of responsiveness
to the environment.
Children with this gene
disorder develop, albeit with
delays, until about ages 1-2
when they begin having sei-
zures that cause regression.
Within months, or even weeks,
children lose their ability to
move, speak, eat orally, and
control their head and their
body. Babies with the FRRS1L
gene disorder grow up to be
wheelchair bound, non-verbal,
tube-fed and in need of con-
stant care.
For Providence, it took
just three months to go from
a crawling baby to one that is
trapped in a body overtaken
by seizures and involuntary
movements.
Fundraising promising
In August, the three women
helped create the fundraising
page www.FRRS1L.ORG and
mobilized other families. The
exact number of children in
the world living with FRRS1L
gene disorder is unknown, but
in a Facebook support group,
parents of 14 FRRS1L chil-
dren have started to raise funds.
Miranda Rector is helping the
group with public relations.
The initial goal was
$100,000 in the fi rst month, the
amount needed by Dr. Berge
Minassian, a gene therapist at
the University of Texas-South-
western, to compose a team of
researchers.
Minassian told parents
he would investigate possi-
ble treatments, but he advised
them that it would require at
least $400,000 to fund the proj-
ect up to clinical trials.
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 com-
mitted. 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 appreciated.
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 scien-
tists 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.
Providence’s Journey
Providence turned 4 on
Aug. 4. Born without compli-
cations, 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.
For more about
Providence and the gene
disorder visit:
www.FRRS1L.ORGLink_
rkuchkta
Instagram: Hope4frrs1l
Facebook: Finding Hope
for FRRS1L
licensed and educated min-
ister, he said his role is to
equip believers. He pro-
vides some order, though
he does not their gather-
ings to be ritualistic, but
people to make Jesus their
centerpiece and to bless one
another.
He hopes the suicide,
pornography,
loneliness
and despair that have grown
during the pandemic will be
reduced by increased faith
in God.
Austin Naillon, Assem-
bly family pastor, said he
likes the changes.
“We’re excited,” he said.
“It looks like God is doing
something big, and we
couldn’t be more excited.”
Hermiston
Assembly
meets at 10:30 am for Sun-
day service.
The infant was improving,
albeit slowly, and by the time
she was 1 year old, Providence
was supporting herself sitting,
her head control improved, she
was eating softer foods like
steamed veggies and she was
army crawling around the Rec-
tor’s home in Hermiston.
“That fi rst year she was
crawling, eating toast, blow-
ing raspberries. She laughed
and would grab and pull her-
self 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 star-
ing 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 hav-
ing “absence seizures,” which
cause lapses in awareness.
They are a type of generalized
onset seizure, once referred to
as petit mal seizures, mean-
ing 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 daydream-
ing and may not be detected
for months. An epilepsy medi-
cation, 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 Providence. They did
what seemed to be an inordi-
nate 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 strug-
gling to drink from a bottle.
Doctors — and the Rectors —
realized even higher doses of
ONFI weren’t working.
“If anything, Providence
started becoming more lethar-
gic, 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, Provi-
dence was admitted to OHSU
for a gastrostomy-jejunostomy
tube, which passes through the
abdominal surface, into the
stomach and down into the sec-
ond part of the small intestine.
The family returned home,
but on Christmas Day, Prov-
idence 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, Prov-
idence 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 laryngomalacia,
essentially losing muscle tone
in her throat.
Medical equipment started
stacking up. She was pre-
scribed a Nebulizer, electric
suction machine, ventilator
for CPAP use, medical chairs,
oxygen tanks and more.
In May 2019 she had sur-
gery for a gastrostomy tube, a
more permanent feeding tube
that connects directly to her
stomach, and a supragotto-
HERMISTONHERALD.COM • A7
Kathy Aney/Hermiston Herald
A member of the Hermiston Assembly congregation masks the
edges of a sign in the church’s lobby for painting on Monday,
Sept. 6, 2021, during a work day.
plasty to remove tissue from
her throat to help reverse the
strider and laryngomalacia.
After the surgeries, Prov-
idence further regressed.
Among other things, she has
cortical vision impairment,
meaning she has diffi culty con-
trolling her eyes. Her vision is
currently around -15 corrected
to a -12. She has been on seven
diff erent anti-epileptic medica-
tions; 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 …
ter might have somewhat of a
normal life. The possibility
of her walking, even hold-
ing her head up on her own.
Even a fraction … that would
be a huge blessing 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 fam-
ily,” Miranda said.
For the last six months,
Miranda and Jason have seen
each other as little as 15 min-
Wil Phinney/For the Hermiston Herald
The Rector family of Hermiston pose for a photo in late
August 2021 at Funland Park in Hermiston. From left, Jason,
Providence, 4, Miranda and Joshua, 2. The family is working
to raise $400,000 to help Providence, who suff ers from a rare
genetic disorder.
‘she’s not holding her head
up; you might want to get her
checked out,’” Miranda said.
“We took her to a pediatri-
cian who told us some kids
take longer than others. ‘Give
it six months,’ and that’s what
we did.”
Miranda and Jason ques-
tioned their parenting skills.
“We thought it was our
fault … we didn’t put her on
her tummy early enough or
get early intervention 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 condi-
tion is progressive. The stud-
ies say that quality of life
is unknown but not good,’”
Miranda said,noting that
most children with EEIE, also
known as Otahara Syndrome,
don’t live past the age of 2.
Hope
The chance that gene
replacement 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 daugh-
utes 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 Miran-
da’s assessment that their mar-
riage 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.”
CONCEALED CARRY
PERMIT CLASS
SATURDAY
SEPTEMBER 11 TH
Hermiston
Ranch & Home
9AM
&12PM
CLASSES
Multi-State $ 80
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Shaun
Shaun Curtain
Curtain 360-921-2071
360-921-2071
or or email:
email: ShaunCurtain@gmail.com
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