In June of this year, Sara and Mitch took Moira to the emergency room for an ear infection that wasn't going away and resulted in a fever of over 104 for several days. Moira was admitted to Seattle Children's Hospital (seattlechildrens.org) and was admitted for a week. During this time, Sara and Mitch were given little information as this disease spiraled out of control. The fever that lasted 7 days was a big indication as to what auto immune disorder Moira was now faced with. Hemophagocytic lymphohistiocytosis (HLH) a rare auto immune disorder that Seattle Children's Hospital see 1-5 cases a year. (http://en.wikipedia.org/wiki/Hemophagocytic_lymphohistiocytosis)
Sara and Mitch felt panic and relief at this point, now knowing what was plaguing their daughter. They felt blessed to be in the right place for this disease, Seattle Children's Hospital was the first they visited. Plus, they see 1-5 cases a year in their region, which covers as far North as Alaska, down to Northern California and sometimes as far East as Colorado. Sometimes the diagnosis of HLH could take weeks. Moira quickly started a 9 week course of Chemo and Steroids. She responded quickly and the Doctors were excited and this lead them to believe that Moira had the secondary form of HLH. This meant that she would be cured at the end of her 9 week Chemo/Steroid treatment.
Week 8 of treatment! Only 1 week left and the genetic testing came back. Moira didn't have secondary, but primary (genetic) HLH. Sara said it was like the rug got pulled out from under them. They were looking forward to having Moira cured and return to life before this disease took hold Moira. Now, the plan had to change and they felt like they had lost precious time.
A bone marrow transplant is now Moira's best hope for recovery and remission of this potentially deadly disease. Sara and Mitch need your help. This is a costly procedure and even with insurance the out-of-pocket medical expenses are growing. Moira will get her transplant November 12th, she will be hospitalized one week prior and between 5-8 weeks after transplant. Sara and Mitch will have to move to be within 30 mins of the hospital during her hospitalization and the housing costs will add more to the financial burden. Her family and friends are asking for your help. Please keep this precious family in your prayers. And if you can help us raise money to offset their medical and housing expenses.
Thank you for taking the time to read about Moira's story.