>> We're good.
(piano music)
>> 105. Owen you good for 105?
>> Yeah.
>> He's just a cheerful smart kid.
His biggest strength is his positivity.
He finds ways to overcome the challenges that he has
and do the things he can do and wants to do.
>> Ready?
>> Yeah.
>> Owen's pretty amazing.
He just doesn't view himself as having a disability.
He just views himself just like anybody else.
>> I really music because it's sort of,
you both find kind of physical connection
between you and the instrument.
(drums)
>> He always had a sense of rhythm like a metronome.
He's spot on the beat.
He's just absolutely passionate about music.
(guitar strumming)
Because he was our second child,
we were pretty confident that everything would be fine.
But it was pretty clear within about five days
that there were larger issues.
He was born with a rare genetic disorder
and had a lot of challenges early on.
>> He doesn't feel a lot in his extremities
and so he gets no feedback.
All of the inputs that a child gets, feeling the carpet,
the stuff you kind of take for granted in life.
A lot of that information the brain needs he's not getting.
(video game chiming)
>> I never really had a complete realization
of when I realized that the had a disability.
He's just my brother.
He works his way around all of the limitation
and is still able to do the things he really loves
and enjoys.
>> One of the features of his rare genetic disorder
is severe orthopedic impairment.
This is Owen's spine before.
The S curve.
And remember how he was bulging.
It wasn't just an S curve, it was twisted too.
He's been in orthotics his whole life.
Every six months we'd cast him and get orthotics.
>> He was headed in a direction
to where both between his legs and his spine,
he was going to be wheelchair bound completely.
Bracing was just a temporary fix.
>> We'd seen may six or seven other orthopedic surgeons
across the country at that point.
We had one orthopedic surgeon tell us,
"I don't care about his back, I'm just working on his legs."
If he wasn't worried about Owen's back, who would be?
Our surgeon at the time said,
"My friend Paul Sponseller at Johns Hopkins Hospital,
"is the one that you need to see.
"He's a good friend of mine and he will take care of you."
>> Hey Owen, how are you doing?
>> I'm doing good. How are you doing on your end?
>> I'm doing great. Doing a lot surgeries.
None are a cool as yours,
but I'm always here for you if you need anything.
If you think of anything please let me know.
>> In Owen's case, he needed a lot of reconstructive work
done on his spine and his legs and his feet.
He had severe scoliosis.
His spine was leaning him over to the side.
He also had deformities of twisting
of his legs, his knees and his feet were deviated as well.
We decided to start with his spine first
because that was the most severe deformity
and was getting worse.
>> He explained that Owen's spine would be fused
from T3 to his sacrum.
He would out two rods in his back and then take
every individual vertebrae and screw those to the rods.
That shows how tall and straight he was after.
It was really like getting a different kid back.
>> Then we decided to address his legs.
So we fixed the knees so that they would grow straighter.
Then we fixed the ankles and feet
so that they would untwist.
>> With Dr. Sponseller's help
we were able to make him a walking adult.
Nobody else would have done that. He did an incredible job.
>> The first step is to do the surgery
and to see if it's turned out right.
The second step is to see on an X-ray,
seeing if things are better.
The last and perhaps the best step is seeing him
back in life doing what you want
with the results of that surgery.
>> I think it's really given him a new lease on mobility,
doing the things he enjoys.
>> There's a lot of little things along the way,
call them fate or whatever,
but we got the help we needed, when we needed it.
He's made huge strides since the surgeries.
We didn't know what to expect for Owen
and he has exceeded our expectations.