No parent thinks that something is
wrong with their perfect little baby.
It was hard. I mean,
there are a lot of tears,
but at the same time we
kind of wanted. You wanna be
brave and put on a brave face for your baby.
When Jake and Haley Komarov Middleton
welcome their baby boy rider,
they had no idea what was ahead of them.
It's been a whirlwind of doctors,
hospitals and therapy ever since
their son was diagnosed with
spinal muscular atrophy or SMAD.
Just weeks after he was born,
he received a life changing
infusion with a staggering price
tag that could just save his life.
August is Sman Awareness Month
and tonight Maggie O'meara has
the story of this little hero as
you're about to see Baby Ryder and
his parents are paving the way for
other Idaho babies born with us may.
The whole pregnancy was completely
healthy and no complications,
no signs of anything.
And then as soon as he was
born he was diagnosed with.
Low muscle tone.
New parents, Jake and Haley Comer
were told that genetic testing
may help them find out what
could be causing their newborn
son riders low muscle tone while
they were waiting for results,
the unthinkable happened.
The after writer turned one month
old is when I actually found him
unresponsive at home and I had
him in a little baby carrier.
So I called 911 and started CPR and.
Luckily was able to revive him with
CPR, but that you know we were
rushed to the ER and that kind
of initiated our month long stay
in the hospital. That's when the genetic
testing came in. After a week in the
PICU has Saint Luke's downtown,
we've got our test results back.
That writer was diagnosed with SMAD
spinal muscular atrophy type. 1S
MA is a progressive rare genetic
disease that impacts the muscles.
Doctors at St Lukes told Haley about
a promising new treatment option.
An infusion that could
save her baby's life. They
told us that we would be they'd
be transferring him to Salt Lake
Primary Children's Hospital.
Nobody in Idaho and hospitals in
Idaho performed this infusion.
A couple days later,
met with the neurologist and learned
about our treatment options and.
This. Gene therapy options
seemed like the best one.
It's just a once,
once in his lifetime one hour
long gene therapy infusion.
He is missing a very important gene
that produces survival motor neuron
protein helps our body move our muscles.
It basically injects this gene into his body.
And then his body then learns how
to keep producing this survival
motor neuron protein to keep his
muscles alive. The Combers were stunned
when they found out just how much
the infusion treatment would cost.
It's called soul Jensma with
Izzy and it costs $2.1 million for
a one single once in his lifetime
infusion. They weren't sure
their insurance would cover. It was
terrifying when they told us well. I
hope you guys take monthly
payments for the rest of my life.
We paid our deductible and are added
pocket and they took care of the rest,
but that definitely took the
stress off of our shoulders
during such a traumatic time. So
we're very grateful,
but was such a whirlwind?
I mean, we're we feel pretty fortunate
because a lot of families that we've
come to find out how I really had to
fight hard for weeks and months to
get their insurance to cover this.
Then Uhm, writer was so his disease
had progressed so much by the time he
got it that he was at the point where
every day mattered. After the Infusion
Riders started gaining strength.
Eating got stronger, his voice got stronger,
his cry got louder, had a really
weak cry and now he can like
lift his arms above his his head
and reach out and grab toys and.
Can't quite hold his head up yet,
but we're working on it every day.
Baby Rider is making strides and
Haley is determined to do something
to help other families
like hers. What we're really working
towards right now is having SMAD
added to Idaho's newborn screening.
Idaho is one of the last remaining
states that does not include
SMAP on its newborn screening
before the approval of this gene
therapy infusion two years ago.
With the life expectancy for babies.
Take notes with SNA type
one like he has was not not much
past two years old which is
just devastating for families.
So having me out of title hosted weren't
screening will allow these babies
to have access to treatment so much
sooner with how progressive SMAD is,
the sooner you can get treatment
and care you know the better
outcomes you're going to have that
they're going to have in life.
But yeah, it's just a simple blood
test and I've been in contact with
the Department of Health and Welfare.
And then also cure asthma,
which is the leading organization for SMAD.
They've been really active and
getting this added to every state.
Newborn screening.
She's in the
early stages, but this mom's goal
is to make that happen. We just
think that every baby deserves to be,
you know, to be treated with this
as soon as
they possibly can.
Thanks to this $2.1 million infusion
rider and other babies like him
diagnosed with us may now have a.
Fighting chance he's expected to get
stronger and hopefully meet those
milestones of walking and talking
and crawling. And
all those things.
But we just don't know we're working hard.
We're working hard,
and physical therapy and feeding
therapy and all these things
to give him the best possible
chance one day at a time 70.
Oh, Haley and her husband.
You are doing so much to raise awareness.
I had no idea this even existed,
so we thank you for sharing that story
writer is the only baby in Idaho so far.
To get this gene therapy infusion,
which, by the way,
isn't that science, just amazing.
He has a long road ahead
as his mom mentioned,
but his parents say he is a fighter.
And by the way,
if you're if you're interested in
more information about esmay and
helping this local family go to
this story right now at ktvb.com.
Maggie, thank you for bringing that to us.