At 9 months old, Mira Erdmann was diagnosed with a severe case of Systemic-onset Juvenile Idiopathic Arthritis (SoJIA), with a life threatening complication called Macrophage Activation Syndrome (MAS) Hemophagocytic Lymphohistiocytosis. On December 7, 2011 she underwent a bone marrow transplant in Cincinnati. Prior to that, Mira spent over 200 days in hospital stays between Green Bay, Children’s Hospital Milwaukee and Children’s Hospital in Cincinnati.
Only one person out of 1.2 million has been diagnosed with Mira’s disease and she is the youngest ever. Mira has been in Cincinnati since October 2011. She is currently being treated by Children’s hospital as an outpatient, three times a week, for treatment and recovery from her bone marrow transplant & open-heart surgery. Mira will remain in Cincinnati for the next 6 months isolated from the general public.
Her family has been in isolation for the past two years to keep from catching any germs that would be invasive to Mira’s health. Mira has a twin brother Wyatt (3) and an older sister Johanna (5) who are also in isolation in Green Bay, WI.
Isolation is needed as her parents and family travel between Green Bay and Cincinnati to be with Mira. These trips back and forth have been ongoing since October 2011 and will continue until Mira is healthy. The gas alone is a burden not to mention the astronomical medical and living fees.
On February 23, 2012 Mira was released from Children’s hospital and her family care takers moved from the Ronald McDonald house into an apartment in Cincinnati. The move was necessary so that Mira would be in a germ free environment for her health and safety.
It is anticipated that Mira will return to WI in late summer 2012 if all goes well in her recovery process. The entire family will have to remain in isolation in a germ free environment for an additional two years. We are in the process of remodeling a basement garage into a family play space along with building an additional detached garage with a second level office to allow her parents to work from home while providing care.
Your donations will allow for the necessary adjustments during these difficult times. We hope to make isolation from the general public easier on family and friends upon Mira’s return. We are grateful for anything you can do to help this family get through this crisis. Please contact us as soon as possible. Click here to make your donation to Mira’s garage fund.Thank You and God Bless Click here for updates on her medical condition.