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Aniveah's Histo Heroes

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Histoplasmosis... a word I never knew existed, a word that turned my world upside down. My happy and healthy 9 year old daughter, Aniveah, became very weak and began having strange symptoms in the fall of 2018. This led to many diagnoses of cold, flu, pneumonia, and autoimmune disorders. We kept getting dismissed with no real explanation for all the random rashes, fevers, pain, and heart and respiratory issues. After 2 months of repeated doctor and ER visits with no answers, we were lucky to meet an amazing nurse practitioner. She was determined to find an explanation for why my little girl who loved sports, skateboarding, and doing tricks on her bike, was getting sicker by the day. It was then that we discovered that Aniveah has several nodules in both of her lungs suggesting some type of disease process. Two days later, Aniveah woke up screaming in pain, her body shaking violently . She was admitted to University of Chicago hospital that day for her first stay. It was discovered that the nodules were due to a lung disease called histoplasmosis. Since her diagnosis, Aniveah has had many hospital stays and has undergone a countless number of tests including CT scans, MRIs, lumbar puncture, EKGs, and enough blood work for a lifetime. By November, she became dependent on a wheelchair and began physical therapy to rebuild her strength. With the destruction of her immune system, new co-infections were attacking every week. Since Aniveah needed 24 hour care, I was unable to return to work. On Christmas Day, my medical leave exhausted and I was terminated from my job of almost 16 years. I was subsequently denied unemployment since I "chose" not to return to work when my leave ended. With no income since September and no insurance since December, bills are adding up at an alarming rate. We were evicted from our home, and due to Aniveah being hospitalized again during the 5 day window we were given to move, along with not having the financial means to move and store our belongings, we lost everything. All my kids' toys, our beds, our furniture...gone. With Medicaid now being the only insurance coverage that we have, none of her visits to her care team in Chicago are covered, including the medications that they prescribe. For each doctor visit, I am required to pay $300 up front, and the itraconazole that she has been taking since October to treat the histoplasmosis costs nearly $200 per month. I have accumulated well over $100,000 in medical bills in the past year and they are still climbing. I have had to put $2000 worth of work into my truck, a 2008 with 165K miles, to keep it safe enough to get Aniveah back and forth to Chicago. We will also need to take a trip this summer to the Mayo Clinic in Minnesota. Her care team in Chicago says that Aniveah is a very complicated case and feels that there may still be an underlying condition that they are missing. They have referred her to Mayo in hopes that they can figure her out. As you can imagine, travelling is going to cause another huge financial strain on me and my children. I have tried to stay afloat through all this by working from home making custom cakes, but I can no longer do it alone. My savings has been exhausted, and at this point I've had to swallow my pride, tell our story, and ask for your help. Please find it in your heart to help me cover the expenses of my baby's treatment and rebuild our lives. I realize that money is tight for most people, but even a few dollars gets me closer to my goal. If you are unable to donate, I urge you to please share with your friends and family in hopes that someone out there can help. 

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  • Anonymous
    • $50
    • 5 yrs
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Organizer

Crystal Jones
Organizer
Lake Station, IN

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