Update as of Jan. 27, 2012: According to an update on Mira’s CaringBridge site by her aunt Kelly Lieser, Mira was moved to the ICU the morning of Thursday, Jan. 26. "She remains stable in ICU, but still in critical condition," Lieser said on the site. Mira has not yet been able to receive the bone marrow transplant.
When Mira Erdmann was an infant, a fever and the possibility of an ear infection led her parents to seek medical treatment.
That visit, about two years ago, became the start of dozens of doctor and hospital visits in Mira’s now 3-year-old life.
Eventually, the Green Bay, WI, toddler was diagnosed with Systemic Onset Juvenile Idiopathic Arthritis (SoJIA) with Macrophage Activation Syndrome (MAS)/Hemophagocytic lymphohistiocytosis. As Mira continued to be in pain and “flare up” from her condition, a bone marrow transplant was provided as one of the last options offered by medical professionals.
“It’s the only thing with ‘cure’ attached to it,” said Mira’s aunt and Maple Grove resident Kelly Lieser. “The flares were getting worse and worse this summer. Doctors exhausted all other treatments.”
In July 2011, it was decided Mira would move forward with the bone marrow transplant from a donor. Finding a suitable donor would prove to be a difficult task. Family members were tested for compatibility with Mira. No one, including Mira’s twin brother, proved to be a match.
According to the National Marrow Donor Program, more than 10,000 patients each year in the United States are diagnosed with life-threatening diseases for which a marrow or cord-blood transplant from an unrelated donor “may be their best or only hope of a cure.” Seventy percent of those needing a transplant do not have a matching donor in their family.
As the donor search went outside Mira's family to the National Marrow Donor Program’s Be The Match registry, so did Lieser. Not content with waiting, Lieser decided to organize a "Team Mira" donor drive in Maple Grove—to possibly help Mira and others in a similar situation.
“People were asking how they could help and I wanted to help in some way,” Lieser said.
In partnership with the Be The Match Foundation, Lieser worked to put together a donor drive in Maple Grove—more than 300 miles away from Mira and her family. She described Mira as part of Maple Grove’s “extended family” in the flier distributed to parents at School, where Mira’s cousins attend school.
“A lot of people here have done things for my sister and her family,” she said. “My sister calls it her ‘angel network.’ As a community, Maple Grove takes care of its own.”
In all, 60 new people signed up to become a possible bone marrow donor and $6,000 was raised for the Be The Match Foundation during the Team Mira drive Saturday, Sept. 17, in a meeting room at Maple Grove's .
“It really made other people feel like they were doing something helpful in a fairly helpless situation,” Lieser said.
As for Mira, she is preparing for a bone marrow transplant. Two anonymous donor matches were found and confirmed through the National Marrow Donor Program—the same week the donor drive took place in September. Baring no additional flare-up incidents, the transplant for Mira will be at Cincinnati Children's Hospital at the end of October, followed by a long recovery period.
Lieser said the willingness of others to spread the word and hope made organizing the bone marrow donor drive a “positive experience.” It’s a cause she hopes to continue to advocate for Be The Match Foundation, even after Mira’s transplant.
“For all of you that have joined the National Registry in honor of Mira, it is hard to find words to thank you,” the Erdmann family said on Mira’s CaringBridge site. “As a parent, knowing that some perfect stranger in this world is willing to do this for Mira is beyond words. When and if you get the call someday, know that you bring such a sense of hope in the darkest hours for someone out there. And that is such a gift.”
How to Help
- Consider becoming a bone marrow donor. For more information, check out the Be The Match website at: http://marrow.org/Join/Join_the_Registry.aspx
- To help offset Mira’s medical expenses, the Lieser’s setup an account for donations in Maple Grove:
FBO Mira Erdmann 'MIRAcle' Fund
13601 80th Circle North
Maple Grove, MN 55369
Check donations can be made out to “MIRAcle Fund”