Tip:
Highlight text to annotate it
X
They prayed for good weather.
no wind, and soft seats on their bikes.
They had already prayed for everything else. Cyclists on a seven-day,
700-mile bike ride were familiar with bumps in the road
The biggest one in their lives was called HLH
-- or hemophagocytic lymphohistiocytosis.
The rare childhood disease is hard to pronounce, difficult to diagnose
and tough to treat. There is no cure, and research to find new and better
treatments is vital.
Some of the cyclists pedaling to raise awareness about HLH have children
who have died from the immune disorder.
"Oh, I feel like I have two little angels on either side of me."
Some have children who have survived.
One is a survivor himself.
They formed a bond based on shared experience
of loss and love
and the desire to do something about it.
"You know, you realize"
"you might not have much time left."
"What had just happened?"
"How did we go from two children to none?"
"That's what I'm spending"
"the rest of my life doing is"
"just keeping her alive,"
"keeping her spirit alive,"
"and, you know, I just wanna,"
"I wanna make a difference for everybody."
The now yearly bike ride
from Mississippi to the front doors
of Cincinnati Children's
is part of their mission to let people hear the stories and find out
about the HLH Center of Excellence at Cincinnati Children's.
"We're doing it because, you know, my son William had HLH,"
"and we believe in the HLH Center of Excellence at Cincinnati
"Children's. And it's the right thing to do. So, a little bit pain
"for a lot of gain." "Compared to these kids that have the bone marrow transplants, this
"is nothing." As the most experienced medical center in the nation treating HLH,
Cincinnati Children's has clinical and research pioneers committed to changing
the outcome
for these families. Learn more about their journey
of extreme determination by visiting our website at cincinnatichildrens.org/hlh
Watch the documentary, "700 Miles to Hope"
- An HLH Journey "It will be fun.
"It's good for them."
"It's good for everybody."