She's a fighter!

For: Fiona
Organizer: Karen Waller
$1,145
of $8,000 goal.
Raised by 12 donors
14% Complete
This fundraiser is closed. Thank you for your support!

The Story

In July of 2013 our youngest daughter, Fiona, was diagnosed with a rare life threatening immune deficiency. Since July 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. If her genetic test comes back normal we probably won't ever know the cause of her deficiency.

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. Over the past 6 months her medical care and treatments cost more than $80,000. In January our deductable and out of pocket for our insurance reset. We will reach our out of pocket by the end of January.

We are trying to raise $8,000 to pay her medical bills. Once we've paid the out of pocket, our insurance will pay 100%. After that the only expense will be trips to Cincinnati. Each trip costs us about $100.

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!


Fundraiser Updates

Posted on February 21, 2014

Posted on February 21, 2014

She's still a mystery. The genetic test we had hoped would show what's wrong came back normal. Our doctor is working hard to figure this out.

Posted on December 19, 2013

Posted on December 19, 2013

Today I feel like I've been in an airport waiting for a flight, only to have the flight delayed again and again (the flight is her diagnosis and treatment). Fiona is a mystery. There are many things that she could be diagnosed with, but there is also something that doesn't fit. When we get test results back they are sometimes confusing, most of the time we think we understand what they are testing, but we don't.

What we know is that her t-cells are low, her b cells are low, she is loosing protein somewhere during digestion, her t-cell function isn't good, and she isn't sick. We always come back to why isn't she sick? When they say she should be sick, they mean hospitalized, on her deathbed sick, not just a cold. In spite of replacing her IGG she still has an extremely compromised immune system.

They are sending off more genetic tests. One of them is only done by one person in the entire world, and it often gives an answer when no other answer can be found. Again, they drew as much blood as they could from Fiona.

Sometime in January, possibly the 8th they will scope her stomach and do a colonoscopy. The gastroenterologist wants to rule out celiac disease. Looking from the top and from the bottom of her GI tract leaves about 10 feet in the middle that they won't see. They may have her swallow a capsule camera to look at the rest.

We've been told to keep her away from crowds, and to mask her when she leaves the house. Have you ever tried to get a 2 year old to wear a mask? It's not her favorite thing. I think that in time she will get used to it.

One of the things we learned yesterday is that a specific t-cell function test called pha is the best indicator of how well her t-cells are working. In August her number was 203,250. Last month it dropped to 17,563. Normal range is above 135,190.

There is more to write, but naptime is almost over. More tomorrow!


Posted on December 13, 2013

Posted on December 13, 2013

She's been admitted to the hospital. Read more here... 

http://fionafighter.blogspot.com/

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