From Fi's mommy, Karen:
In July of 2013 - just before her second birthday - our youngest daughter, Fiona, was diagnosed with a rare life threatening immune deficiency. For the past 2 years we've been working to find a diagnosis for her. So far the lab tests used for diagnosis have come back normal. We are still waiting for a genetic test to come back. We know that this is something she was born with, it isn't a virus like AIDS.
We've been told that Fiona may be the only person with her specific condition. Large parts of her immune system are failing, and the only cure is a bone marrow transplant. A bone marrow transplant would replace her defective B-cells and T-cells. Our only other option is to continue with her current treatment and wait for her to get sick.
The medicine we use to keep Fiona healthy is a little over $3,000 a month. In the first 6 months her medical care and treatments cost more than $80,000. In January our $8,000 deductible and out of pocket for our insurance will reset. We will reach our out of pocket by the end of January.
Of course, insurance doesn’t cover everything. Our insurance may not cover the $15,000 to $20,000 required for DNA testing. Each trip to the hospital in Cincinnati for testing and treatments costs us about $125. If we go once a month it will cost $1,500 per year. We could really use gas gift cards to pay for our trips to Cincinnati. We try to get small toys for James and Fiona each time we go to Cincinnati, it helps keep difficult trips fun for them. Fiona loves stickers and coloring books. We use them to keep her occupied during her treatments.
For our family of 8 this has been a life altering experience. We have learned to work together and sacrifice. We are very thankful for all of the amazing people in our lives who have helped us and prayed for us. Thank you! - Check our blog for updates: fionafighter.blogspot.com