Out of a million children, there may be one or two like Tristan
Coffey or Eagan Sutton. They are champions of a fight far beyond what
any child should know.
"(Eagan) is the 4th child with his diagnosis in
the United States," says Eagan's mother, Megan Sutton. "So finding
anybody in the Midwest or in our area to connect with and have as a
support group was kind of out of the question."
But that support did come when Tristan walked
into Eagan's hospital room in 2014. The 6 year-old was receiving intense
steroid treatments every three days for a rare auto immune disorder
called Juvenile Dermatomyositis. Regardless of the assault his body had
launched on itself, Tristan drew a picture for a crying boy in the room
beside him. At the side of his mother Brianna, Tristan introduced
himself to Eagan. He was a fellow fighter of roughly the same age who
battled a lung disease called Chronic Eosinophilic Pneumonia.
As the boys continued to meet during treatments, the friendship grew. And so did an idea.
"God just gave me a vision for a family support
group where everyone was included. There was no diagnosis that defined
it," said Brianna, who had already quit her job to focus on caring for
Tristan. Now she would find a new job, and care for so many others.
She started speaking to other families affected
by a child's rare illness. She started thinking of how those families
could be supported. She started "Wichita's Littlest Heroes."
In slightly more than two years, the first two
heroes who had provided Brianna's inspiration were joined by over 70
other kids, all of whom had received a life-changing and, oftentimes,
life-threatening diagnosis. She teamed up with other parents who hoped
to take on more leadership in the nonprofit organization.
Amber Jamis and Candace Wright were two of those
hopefuls. Their children had grown close through events organized by
Wichita's Littlest Heroes. One of those events was a surprise visit to
Koch Arena in January to see the Shockers practice. Eight year-olds
Weston and Wyatt Wright, along with 2 year-old Eastyn Jamis, went 1-on-1
with the biggest Shocker stars. In many ways, that was at the request
of Gregg Marshall.
"We asked them to come to the tail end of
practice and see the very end of practice. Then we can hang out with
them and shoot a couple of shots and get an opportunity to mingle with
them," said Marshall, who seized his opportunity to do so. He lifted
Eastyn up about ten times to assist him in dunking a basketball. Eastyn
has bilateral retinoblastoma and has already lost an eye. He gets
chemotherapy injections in the other. But on a day when those who care
for him brought him to the Roundhouse, Eastyn was seeing only his
Shocker heroes.
"If our guys or our staff or anybody in our
organization can bring a little joy and happiness to folks in this
community, why wouldn't we do that?" asked Marshall.
It's a question that is answered only though
action. The group at Wichita's Littlest Heroes answers it ever day. In
January, they teamed up with Auto Masters to donate a car to a
Hutchinson family needing transportation to and from Kansas City for
their son's cancer treatments. In February, WLH collaborated with
Protection 1 and Drywall Systems, Inc. to build a wheelchair ramp for a 2
year-old girl named Trinity Guthrie.
"Everyone knows we were trying to get a ramp for
Trinity because it was really hard to get her in and out of the house.
And it was a blessing for the ramp," said Trinity's mother, Melissa
Guthrie.
Prior to the ramp being installed in early
February, the Guthries used motorcycle ramps in lieu of the more
adequate, but ultimately much more expensive alternative for Trinity, a 2
year-old Disney princess lover and her family's emotional epicenter.
"I've dedicated a lot of my life to her," said
Trinity's brother Victor, a soft-hearted 17 year-old who dropped out of
high school so he could help his family's endeavor to care for his
sister. He is now pursuing his GED while sharing loving looks throughout
the day with Trinity, who is not estimated to live long past her second
birthday.
She has spinal muscular atrophy Type 1. which is usually fatal by age 2.
"We've had some scary episodes where you look at
her and you think that's the last time you are going to see her. And
that's heart-breaking," said Melissa, tears welling in her eyes.
But on a recent Sunday afternoon at Hurts Donuts
in Wichita, Trinity, along with dozens of other heroes, all connected by
the same fabric of support, healed those broken hearts with smiles.
They all wrote down their diagnosis on a balloon, took it outside, and
just let go.
"These are their friends that completely
understand what their everyday life looks like. So, yeah, today was a
good day," said Coffey.
And thanks to heroes - those who inspire and those who support - there will be many more good days ahead.