Little Fiona Endures Weekly Treatments

We've come a long way since the boy in the bubble.  The painful treatments are keeping Fiona safe for now. 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. Please help fund her cure: http://www.gofundme.com/shesafightercom
http://fionafighter.blogspot.com/2013/12/treatment-changes.html

FIONA - She's a Fighter

Follow Fiona's Progress with her mommy, Karen's blog.  Treatments, Testing and Potty Training

help fund Fiona's Fight for a Cure:  http://www.gofundme.com/shesafightercom

Sunday, June 22, 2014

The zoo!

We took Fiona to the zoo yesterday. It was so much fun. For about an hour before we left she told us that she was so excited to go to the zoo. We only stayed for an hour and a half, because she doesn't do well in heat, and she can't be in the sun too long. We took the stroller so we didn't wear her out and covered her in sunscreen. We used a lot of hand sanitizer. Fiona loved the animals. She said the giraffes were her favorite. She tried to climb the fence to get to the lemurs. She told us that she needed to walk on their grass. There was a baby lemur who was hanging on a swing, and Fiona yelled, "don't worry! I'm coming. I'll save you." She loves Diego, and thinks that all baby animals need to be saved. When we got to the elephants she told us, "that's my elephant. I ride it." I think she was disappointed that she couldn't get to the animals. She loved yelling, "hear me?" to every animal we saw.

Fiona is doing really well. She's healthy and growing. In July when we go to Cincinnati they'll collect DNA samples from Fiona, Christian and me. They'll store them to see if our insurance will approve genetic testing.

http://fionafighter.blogspot.com/

Please Help Fund Fiona's Cure

FIONA IS FIGHTING FOR HER LIFE. Read her story in the words of her mother, 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 year 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. 

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. How you can help:  http://www.gofundme.com/shesafightercom

http://www.gofundme.com/shesafightercom