New at 6 having a child battling
cancer is tough enough for any parent.
Now imagine there could be a
way to save them from suffering,
even potentially cure them.
But insurance won't cover it.
And that is the reality for a family,
and a local nonprofit is
stepping in now to foot the bill.
There is a powerful reason why, too.
WCNC Charlotte Michelle Bowden with this
story in tonight's where's the money?
The Isabella Santos Foundation
is named for a little girl
who lost her cancer battle.
Now her friends and family are trying
to make sure other kids are armed with
everything they need to fight cancer,
even though insurance companies
aren't willing to help.
10 year old Caller foot wants you to
know he's like every other kid and
normal kid day for me. Swim or climb
trees or play with my dogs.
But he also spends a lot of time
at Levine Children's Hospital.
The medicine taste nasty there,
makes you all feel weird inside.
And whenever they poke stuff free,
it's like you can feel the medicine
and go for your veins. Yeah,
it's tough, you know,
it's really tough. Because you know.
You're as a parent, you feel helpless.
You know there's there's just not
a lot that you can do. Other than.
Just pray and and hope that the
next medicine or treatment works.
In the last five years,
Collier has had tumors cut out.
He's had radiation rounds of chemo,
even an experimental brain
treatment that was radioactive.
So much so that when he had this treatment,
like we couldn't be around him.
But this time around, doctors tried
something newish called precision
medicine where they biopsy a tumor
and determine the best course of
treatment based on the results. We
have seen this make incredible
differences in patients whose
tumors are growing and we're not.
For why they're not responding to therapy
when we sequence them and we can find
a specific mutation that has a drug
that's going to turn that mutation off,
and we've seen that completely change
the outcome for those kids. OK,
please tell me your name.
Isabella. Isabella Isabella Santos.
Santos premises. Daughter Isabella
battled cancer for five years.
As a parent, you feel like I just
tortured my child unnecessarily.
It was toward the end of Isabella's
fight when doctors finally
used precision medicine on her.
They did treatments.
To her, which they called Kitchen Sink,
which meant we're just gonna
throw everything we have at her.
And you don't even think about
what comes with all those side
effects of all those medications.
So to have all of that not work
and now you you can't hear,
you now can't have a child and
all those things that could have
been taken off the table just
seems absolutely crazy to me.
So if we could go back in time
and figure that out earlier.
You know, put things in place so
that kids are have safer treatment,
don't have as many side effects
but have even a better outcome
than we should be doing that every
single time. The problem.
Most insurance companies don't
cover precision medicine yet,
but instead of waiting until it's
almost too late, we want to be
doing this right at the beginning.
We want to know how to best treat
each child right from their diagnosis
until insurance covers it.
The Isabella Santos Foundation
has pledged to pay the $1500
cost for kids at Levines.
So far, the nonprofit has
made sure 81 kids have had
precision medicine biopsies,
including Collier.
I know they're working on
some new treatments for you.
What are you hoping happens for you?
And I don't have to do this anymore.
Call your really is an amazing
kid and truly the inspiration for
the Isabella Santos Foundation.
They've raised $9 million in 15 years,
mostly through grassroots efforts.
Now one other interesting note,
the doctor that we interviewed there
in the piece, she told us about a
recent case that she wrote about.
It's a young girl dealing with
a brain tumor who fought for
a year going through chemo.
It didn't work.
Then they finally did precision medicine,
figured out the best approach,
and now she's doing really well.
The doctor is hoping insurance
companies will see this paper that
she's just written and perhaps.
Changed their ways.
Reporting in Charlotte.
Michelle Bowden,
WCNC, Charlotte.
Incredible, incredible work they're doing.
If you'd like to help support the Isabella
Santos Foundation and its mission,
we have made it easy for you to do.
Just head over to wcnc.com or go to our
mobile app and then look for Michele's story.
We do have a link at the bottom of
the article specifically showing
how you can make a difference.