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We never dreamed that Austin would
have the same low muscle tone as
Savannah. However, this time we
were already seeing a therapist
weekly for Savannah and we were
able to catch many of his symptoms.
He wasn’t sitting or holding his head
up very well by four months and so he
began getting therapy from
SoonerStart
as well.
she was at the top of The Little
Light House waiting list.
Savannah still wasn’t crawling or
walking there was no more
thinking we might just tell them
no. We wanted her to be at the
Little Light House; we wanted her
getting therapy every day!
Since
beginning school
two years ago
Savannah has
learned to crawl,
pull up to stand, get
in and out of her
chair, use her walker
independently, and
she has also grown
intellectually. She
has worked so hard and we are so
proud of every milestone she hits!
“They bring
sunshine
everywhere
they go.”
Around the
time, Austin
was born our
therapist told us
about the Little
Light House.
She said it
would be wise
for us to put Savannah on the waiting
list. After much debate we decided that
we would go ahead and put her on the
list, just in case; we could always tell
them no when she got to the top
of the list.
In the following months, Savannah
and Austin saw two different
neurologists and two different
geneticists. They were also seen by
an ear nose and throat doctor, as well
as a pediatric opthamologist. Each
time they saw a new doctor we would
pray, “Lord, please give us some
answers.” Each time we got the same
answer, “Your children are healthy,
keep taking them to therapy.”
After many months of trying, we finally
got some extensive genetic testing
approved by our insurance. It was
found that Savannah and Austin have
four different gene changes on genes
that scientists don’t know much about.
They were both diagnosed with
hypotonia and ataxia. In short, low
muscle tone and dysfunction of the
cerebellum. Our geneticist continues
to follow up with Savannah and Austin
each year letting us know if any new
information has been found. Just
before Savannah turned four years
old, we received the phone call that
giggle waiting to escape. They both
give the very best cuddles and they
bring sunshine everywhere they go.
We cannot begin to tell you the
blessing that the Little Light House has
been to our family. We look forward to
the milestones our children will make
because of the love and devotion from
the many teachers, therapists, staff and
volunteers at the Little Light House.
Austin was much faster to
develop than Savannah, although
still behind. He was sitting and
crawling on his own just after his
first birthday. And at a year and
a half, we decided to put him on
the Little Light House waiting list,
praying for the day he would get
to join Savannah at school. He
continued getting therapy and he
continued to make progress.
In the spring of 2017, we got the
call that Austin had finally made
it to the top of the waiting list! In
August 2017, he was able to join
his sister and begin school at the
Little Light House! So far, he loves
going to school. He is making new
friends and learning new things
every day. We cannot wait to see
the progress that we know he will
make from being at school receiv-
ing therapy every day.
Although Savannah and Austin
cannot stand or walk, they don’t
let that stop them. They are two of
the most determined children you
will ever meet. They both always
have a smile on their faces or a
THE BEACON | 5