The Beacon 2019 | Issue 1 2019 | Issue 1 | Seite 4

STUDENT SPOTLIGHT
GRETCHEN
NOVAK
BY SEAN AND ANGIE NOVAK
Joy is defined as the feeling of great happiness. We call
Gretchen our joy ambassador. She is a happy, carefree
child of God, who loves to smile and interact with others.
She is a beautiful little girl with so much heart for those
around her.
Gretchen was due April 19th, but on April 17th we learned
she was breech and although we attempted to turn her,
she was over 9 pounds and was not budging. She was
born via c-section on April 24, 2013 at St. Francis Hospital
in Tulsa, OK and was visually healthy-looking. Those mo-
ments hearing her first cry and seeing her sweet face were
perfect. She is a true gift from God.
When Gretchen was 7 months old, she went to a vision
follow-up. The doctor we saw was not seeing Gretchen
respond visually in a typical way. He told us she was
legally blind, and encouraged us to reach out to our
resources. Our Sooner Start coordinator, Sarah Tronnier,
adamantly made clear to us she would bring us to LLH
for a tour and that Gretchen needed to be enrolled on
the waiting list. Through Little Light House we were
reacquainted with our friends’ journey, their son had
albinism, and we felt a relief that Gretchen might have the
opportunity to develop in a nurturing place where every
child has a different starting point and story to tell. We
were encouraged that even though we could not predict
the future for Gretchen, or what she would be capable
of, that Little Light House would support her to become
her best self. It seemed clear that whatever resources
might help a child grow and thrive are sought out in this
place. Gretchen was put on the waiting list on November
2013 at number 149. As we waited patiently and eagerly
for Gretchen to get into Little Light House, we also were
waiting for more answers about Gretchen’s diagnosis.
Our initial struggles were with blindness, low muscle
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tone, mobility, as well as eating and drinking difficulties.
All the hopes and dreams we had while pregnant had
already been altered or put on hold. We at this point had
evolved as parents to adjust to what Gretchen needed
us to be, in addition to what her older brothers needed.
We had become accustomed to doctors and medical
professionals being baffled by Gretchen. She was known
as a “mystery” baby in the NICU. Every test came back
negative with no answers. The hospital geneticist told us
he didn’t know how to dictate her case.” That was a big
moment, when we realized not every child leaves the hos-
pital with answers. We became used to not knowing what
we were dealing with, and at some point the the human
detail of a diagnosis fell to the wayside and we poured
our whole hearts into just caring for her the best we knew
how. As we reflect, we realize now how crucial it is not to
get hung up emotionally on the impact a diagnosis can
bring. Repeatedly, we were told what we might be deal-
ing with and all those conclusions were wrong. Had we
not continued to trust God with His design and plan, we
probably would have succumbed to the false diagnoses
we were often given and lost hope; but God has a mighty
plan for children like Gretchen.
The year 2016 was a year of answered questions and the
end to a lot of waiting. On March 22, 2016 Gretchen got
the call that she would be eligible to start at LLH in August
of that year. Just shortly after this phone call, our geneti-
cist recommended another test, a whole sequencing, and
more waiting delivered an elusive answer for Gretchen’s
diagnosis. We sent off our blood tests on May 5, 2016 and
on September 27, 2016, we received a call informing us
that Gretchen has a rare genetic disorder called PURA
Syndrome.
It was God’s timing on the phone call because Gretchen was at therapy and her primary
therapist was able to help Angie process the information with genetics on the phone.
There was an immediate circle of other parents, relationships we had formed in the
hours spent in waiting rooms. Going online immediately opened a whole new sup-
port group of other parents of children with PURA syndrome. Sometimes the wait,
which is so hard to deal with, is so important in reaching the answers we hope for.
The first night of our diagnosis was full of relief, reading the list of symptoms was
confirming, and feeling the impact of a “welcome” globally was encouraging that
all this time we were not alone in the journey with Gretchen.
The very next day, when Angie took Gretchen to Little Light House, we saw so clearly
that God was preparing this whole time to support us. Out of only 60+ documented
cases worldwide, another student in her class had the same diagnosis. The world is
tiny folks! Out of the whole world, Gretchen had been in the same country, state, county,
city, school, and classroom with another PURA kiddo and that connection has grown into a
family friendship God knew we needed for this journey.
Gretchen will have attended Little Light House for three years when she graduates summer
of 2019. Amongst her time here we have seen so many milestones and miracles. When she
started at age 3, she was not even crawling yet! Gretchen can now crawl and walk, which has
transitioned over the years from highly confined to a walker then to a gait trainer to walking
sometimes holding someone’s hand or all by herself. She can see, keep eye contact for lon-
ger periods, hear, clap, laugh, and smile as a response to interaction with people and her en-
vironment. She can feed herself with her hands and often with utensils. She can drink from
a cup and from a straw. She plays with others, explores her surroundings, and goes potty on
the toilet. Her receptive vocabulary is great. She understands what a talker is and is acquir-
ing communication skills on her adaptive device. She can understand how to be around kids,
people, and animals like dogs and rabbits. Her whole world has been transformed like a fog
slowly lifting.
We want anyone who donates to the Little Light House
to understand their impact has no end. We will always be
thanking Little Light House for the level of care, instruction
and therapy Gretchen has received. As parents we planned
for Gretchen, but we never could have expected her to be
the mystery and special unicorn she is. For that we are
financially so grateful for you all and the opportunity she
has had to grow and learn at Little Light House. We have
had the ability to focus on her medical needs financially,
knowing she has her academic and group therapy needs
met at school. Many families like ours have multiple
children and having access to Little Light House, regardless
of income, provides for the whole family to be cared for. We
are thankful for the close attention Gretchen has received
and we know first-hand that she will be more successful
for her next school experience because the impact donors
have made in creating an amazing school.
Whether you give time or finances or services
or supplies, YOU are making life-changing
differences in every student AND their families
for life!
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