Children's Hospitals Today - Summer 2022 - 28

VITALS / THRIVING
An opportunity to give back
A family highlights the need for raising awareness and sharing their story.
BY GRANT HEIMAN
However, in this rare disease, Paisley and her mother found
connections with others. There are a few other children in the
U.S. with Schwartz-Jampel, and Stacy has stayed in touch with
their parents. " It's nice to know other people who are going
through the same thing, " she says. " We don't have resources
since there's not much known about it, but we're able to offer
support and share information with each another. "
As she's grown up, Paisley has faced recurring respiratory
illnesses, often for days or weeks at a time, as well as other
health challenges. She was on oxygen for three years, uses a
CPAP machine while sleeping, receives ongoing treatments
for breathing and oxygen saturation and occasionally
requires hospital stays at Le Bonheur Children's Hospital in
Memphis, Tennessee.
After tough, extended hospital stays, Alexander realized
the importance of community and advocacy. " There were
times we were so worried about Paisley, we couldn't even
leave the hospital to go eat, " she says. " We relied on donations
and support from our community to get through it all. "
Now, giving back is a priority for the Alexander family.
Paisley lives with a rare condition called Schwartz-Jampel syndrome.
Less than 100 cases have ever been reported.
I
n 2012, during the 20-week anatomy scan, doctors were concerned
about signs of abnormalities in Paisley Alexander's
development. When she was born with a cleft
palate, the NICU doctors at the local hospital
diagnosed her with a common form of dwarfism.
As
Paisley
grew up,
there were
some
" Everything helps, " Alexander says. " From individuals and
businesses reaching out to support and donate, to fundraising
and advocating for children's health needs-it is all absolutely
necessary for every part of care at the hospital. " In June, as
part of their advocacy efforts, Paisley and her mom met with
their members of Congress during the 2022 Children's Hospital
Association's 2022 Speak Now for Kids' Family Advocacy Day.
The event
features
inconsistencies in her diagnoses. Paisley's
mother, Stacy Alexander, took her to Nemours
Children's Hospital, Delaware. " It was a gut
feeling that everything wasn't adding up, "
Alexander says. After one visit, the doctors
diagnosed Paisley with a specific form of
dwarfism known as Schwartz-Jampel syndrome,
a rare condition characterized by permanent
muscle stiffness and bone abnormalities. " After her diagnosis,
there was mostly a fear of the unknown due to the rarity of
her condition, " says Alexander. " There have been less than 100
cases of Schwartz-Jampel syndrome ever reported. None of
her doctors have even heard of it. "
28
CHILDREN'S HOSPITALS TODAY Summer 2022
IT'S NICE TO KNOW
OTHER PEOPLE
WHO ARE GOING
THROUGH THE
SAME THING.
roughly 50 patient
families
from
children's hospitals across the country that
come together and connect with federal
lawmakers to highlight the importance of
the care children's hospitals provide. During
the event, Paisley and her mom talked with
representatives from Mississippi to share their
family's story, highlight priorities essential to
children's health and emphasize the importance
of Medicaid in Paisley's care. With most of
Paisley's care covered by Medicaid, the program
is essential for her continued health and wellbeing.
" When you're in the hardest parts, you
don't think about it, but it was absolutely traumatizing, " says
Stacy. " Now that Paisley is bigger and better, it's important
that we tell our story and give back. "
Tell us an amazing patient story. Email magazine@childrenshospitals.org.
Children's Hospitals Today - Summer 2022

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