West Newsmagazine 3-6-24

March 6, 2024
18 I WEST NEWSMAGAZINE
Local foundation seeks people to take part in helping children with rare conditions
@WESTNEWSMAG
WESTNEWSMAGAZINE.COM
By KATE UPTERGROVE
Everyone hopes for a healthy baby but
what happens when your child is born with
something rare, some genetic condition
that can’t be easily diagnosed? How can
parents get help for their child if they and
their child’s doctors don’t fully understand
what is wrong?
Maria Granados and her husband, Matt,
have lived life through the lens of those
questions. If you ask them “what happens”
and “how can parents get help,” their
answer will be, “You test.” Their daughter
Natalie, now almost 7, has an ultra-rare
form of muscular dystrophy (MD) known
as PYROXD-1. She was diagnosed in
2020 after undergoing many, many tests.
According to Maria, Natalie is one of just
20 people worldwide with her particular
form of MD. Pinpointing her diagnosis was
a challenging journey – one that ultimately
led the Granadoses to form the Take Part
Foundation, a 501(c)3 nonprofit aimed at
helping other families traveling the same
road.
Maria explained that when insurance
wouldn’t pay for the testing Natalie needed,
the couple paid for them out-of-pocket.
“We were fortunate enough to be able to
do that, so we didn’t think twice
about it,” she said. “But what happened
after she had a diagnosis was
– we started noticing that if she had
to go to the ICU, or had to have
an ambulance, or needed equipment
– things started to be covered
(by insurance) more seamlessly
because they had a way to put a
code to it.”
Maria and Matt had already
begun talking about creating a
foundation – the Take Part Foundation
– that would help advance care
for kids with genetic disorders. But
Maria said she kept thinking about
families who might not be able to
pay for testing. Before they could
benefit from advances in care, they
would first need to know their
child’s diagnosis. So she reached
out to the St. Louis Children’s Hospital
Foundation and said, “Hey, do
you guys know how many families
per year get just straight up denied
by insurance in regard to genetic testing?”
“Children’s got back to me and said the
number was around 100 to 120 families in
the previous year,” Maria said. “Of those
families, only about 2% can go on to pay
The Granados family
for the tests outright.”
She and Matt decided that their foundation
should take part in meeting that need.
With a diagnosis, she explained, comes
access to a community of families facing
(Photo provided)
the same or similar diagnoses, as
well as all the things that open up
with insurance and possibly access
to research that could help those
children thrive.
Since the middle of 2023, the
Take Part Foundation has awarded
the St. Louis Children’s Hospital
Foundation $22,500 to help close
the gap in regard to genetic testing
for families with no other payment
option. Maria said the partnership
is breaking new ground.
“Some of the stories we’re hearing
are amazing,” Maria said. “It’s
a long process. We’re paving a new
way for families to have access to
this testing in terms of financial
support, so I’m really excited to see
how many families can be impacted
by this in St. Louis in the next year.”
One way that the Take Part
Foundation is raising those critical
funds is through the upcoming
Wine, Women & Shoes event from
6-9 p.m. on May 2 at the Hawthorn, 2231
Washington Ave. in St. Louis. The evening
features live entertainment, a fashion show,
an auction, luxury shopping, wine sipping
and food from local favorites Westchester
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