Winter 2024

Jesus replied, “You do not
realize now what I am
doing, but later you will
understand.” John 13:7
While Lindsey’s pregnancy and delivery with Austin
were normal, they soon realized he had dislocated hips,
which is not that unusual. When he was two months, he
began wearing a cast with his legs straight out.
“I knew something else was going on with Austin,” says
Anthony. “I remember feeding him, and he would gaze
through me. It was like something didn’t seem right. It
took over an hour to feed him a small bottle of milk.”
The couple took Austin to a variety of doctors for testing.
“Then we took him to Vanderbilt,” says Anthony, “because
we were big on multiple opinions and started going to the
lengths of the earth to find out what was wrong with him.
We saw an amazing doctor who lined us up with numerous
specialists.”
After many tests, the diagnosis was quadriplegia cerebral
palsy, as he was not sitting up and doing other milestones
a child would be doing at eight months. However,
the doctor said she didn’t believe he had it.
“I started to think maybe it was developmental delay,”
says Anthony, “and maybe he will catch up, but the doctor
was adamant that there was something going on. The doctor
said she needed to give us the key to unlock the door,
which was giving him diagnoses so insurance would cover
available resources.
“Basically we had about 12 diagnoses. It started opening
doors, such as getting a seat for Austin to sit in. Those
things are expensive, and insurance doesn’t cover some
needed items, and without an accurate diagnosis many
things are not approved by insurance. Those are challenges
people have with a rare disease or any disease not
recognized by insurance.”
Austin started going to the HAPIE Preschool at Auburn
Early Education Center. “They do an amazing job for those
with special needs,” says Lindsey. “He only lasted until he
was ready for first grade. Then, he became more medically
challenged.”
In 2015, Whole Exome Sequencing (WES) testing was
approved. It was difficult getting approval for a $10,000
test. At the same time, Austin was placed in a research
program at HusdonAlpha in Birmingham.
“One out of 10 Americans have rare diseases,” says
Anthony. “This is not a small problem. It is not easy to find
someone to help if you are not sure what you need. They
told us to look on Facebook.
“Dr. Lane Ruthledge with her team at UAB is the reason
we got the diagnosis for Austin,” he adds. “She helped us
connect to other parents in the country. We are connected
to four families, and we all have a nonprofit charity that
has supported us. It shows the power of persistent parents
to find the best help for their kid or family member.”
Anthony’s father read an article on AOL.com about the
state having funds available for undiagnosed testing and
texted it to him. “That is where UAB and HudsonAlpha
come in,” Anthony says. “There is an undiagnosed network
in the country that supports finding diagnosis
for those who are undiagnosed. It was key to Austin’s
diagnosis.”
When their other son, Sullivan, was born, Austin was
4 years old and was hospitalized more. He began having
problems breathing with his “floppy airway.” He began
arching backward into a half-moon shape, looking as
though his body was controlling him.
As Lindsey was taking care of a newborn, Austin was
diagnosed with dystonia that was part of the underlying
42 EAST ALABAMA LIVING