Mira’s Mom Bikes for Hemophagocytic Lymphohistiocytosis (HLH) Research
August 15, 2016
Thanks to WBAY for this story.
A mother of a survivor of a rare auto-immune disease is helping other families by biking several hundred miles in one week. Tania Erdmann, who many know as “Mira’s mom”, is taking part in 700 Miles to Hope.
“The kids ask me a lot of questions, like ‘Why are you doing this mom?’
“And Mira said, ‘Jeez mom, you’re so signee-upee all the time.’
“Signee-upee. And I’m like, you know what, it’s our duty,” the Howard mother says.
In September, Tania will head to Jackson, Mississippi to begin a seven-day, 700 mile bike ride.
“Our longest day is 135 miles,” Tania told us.
Erdmann is one of 20 riders taking part in 700 Miles to Hope.
“It’s to benefit the Matthew and Andrew Akin Foundation, which was started by two parents who lost both of their children, unfortunately, to HLH, which is the disease that Mira had,” Erdmann says.
Action 2 News has been following Mira’s miraculous story of survival from the beginning. In 2011, Mira was diagnosed with HLH, a life-threatening disease that can cause organ damage. The Matthew and Andrew Akin Foundation says HLH is “relatively new from a research perspective.”
An anonymous donor from Germany provided the bone marrow that saved Mira’s life. Christian Werth has become part of the Erdmann’s extended family.
Tania Erdmann has been watching Mira grow into a thriving, energetic, and happy almost-8-year-old girl, but she knows many families aren’t so lucky. That’s why she’s rising to the challenge of biking through five states in one week. It’s a feat she knows will be difficult.
“So the first day I got on my bike, I thought to myself, this is never gonna work, this will never work,” Tania said.
Then she realized what she was saying.
“I just keep thinking to myself, you know, Tania, when our family was in the middle of this whole crisis, you didn’t have a choice just to not to do it because it was hard. And I try to remember what that felt like and just channel it into this,” Tania said. “But when I think back to when you just don’t have a choice and what this could do to others that are in the middle of the fire, it gets me through.”
The money Tania and other bikers raise will go toward HLH research.
Families, a survivor, and doctors will join Tania on the ride, which ends at Cincinnati Children’s Hospital–the place Mira found life again.
“I can’t wait. I think it’s going to be really exciting,” Erdmann said.
700 MILES TO HOPE: http://www.matthewandandrew.org/700-miles-to-hope/
TANIA ERDMANN FUNDRAISING PAGE: https://www.classy.org/700milemama
VIDEO EXPLAINING HLH: https://www.youtube.com/watch?v=Vxoy5328MZc
MORE COVERAGE OF MIRA’S MIRACULOUS RECOVERY:
Mira’s Miracle Inspires Others to Consider Bone Marrow Donation
After Mira’s Miracle, family pays it forward
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