Fiona's Medical Fund - She's a Fighter

$4,091 of $500k goal

Raised by 26 people in 33 months
Julia Sandstrom Von Bargen  INDIANAPOLIS, IN

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







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Update 74
Posted by Julia Sandstrom Von Bargen
11 months ago
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Fi's mommy's blog Monday, March 28, 2016

NEW LABS
We had new labs drawn earlier this month. Almost everything is normal. I'm waiting to hear back about the other stuff.

There are some things about her t-cells that are off, but I don't know if they are a problem, because they've never been off before. I'll post more when I know.

She has antibodies to CMV (cytomegalovirus). Most adults have CMV, and don't even know it. It's only a problem for people with immune deficiencies and pregnant women. It remains dormant in your system for life, and can be reactivated. This is the first time she's tested positive.

Her antigen response to candida and tetanus are low. Her candida response has been much higher than it is now. Candida response is usually linked to helper t-cells, and her helper t-cell level is really good right now. I always thought her low candida response was because of her low helper t-cell level. Her tetanus has always been low. No one naturally responds to tetanus, we develop a response from our vaccines.

She doesn't have protective levels of diptheria, some strains of pneumonia, and tetanus. Her antibody levels were so low before we knew her vaccines didn't work. She will need to be revaccinated.

The great news is she has been really healthy. She's growing, she's learning about social behavior, and she's a wild girl. She loves dinosaurs, and playing outside. She says she wants to be a nature tracker (from Dinosaur Train).

Last week she told me that she wanted to live in an apartment building that we drove past. She said the strangers there would take good care of her. I asked why she wanted to live with strangers? She said she didn't like the food at our house, and the strangers would feed her lots of fruit. The day before I brought home plums, grapes, and bananas
full of wiggles
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Update 73
Posted by Julia Sandstrom Von Bargen
16 months ago
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Fi's Mommy's Blog Friday, November 20, 2015

UPDATE
Fiona continues to be mysterious. She had labs drawn this week. Her helper t-cell count is 1306!!!! That's normal. The mystery is how did it go away? Her low numbers were worse than AIDS. T-cell deficiencies don't just go away.

Her immunoglobulins are also normal. Her igg dropped from 2056 in July to 821 this week. I'm concerned that it's still going down. We don't know if she's making her own igg, or if her dose was too high. For now we are just watching and waiting. She's developed some nasal congestion today. This is the first time she's been sick in a long time.

I've loved not giving her treatments for the past 2 months. I'm trying to get used to her new normal, which is normal.
now you don't
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Update 72
Posted by Julia Sandstrom Von Bargen
17 months ago
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The Indiana Notary Association Supports Fi's Fund!

The INA continues its efforts to build a strong community by supporting local charities and non-profit organizations.

At the 4th Annual Indiana Notary Day, Monetary donations will be accepted for Fiona’s Transplant Fund. Fiona Waller is a 3 year old Indianapolis girl in need of a bone marrow transplant. Watch Fiona's video story here http://ow.ly/TYBRJ.

Also, food donations will be collected for the INA’s annual food drive for Gleaners Food Bank. Gleaners leads the fight against hunger in Indiana. Learn more about Gleaners at gleaners.org.

Learn, Network and Build your Business at the 4th Annual Indiana Notary Day on Saturday, November 7, 2015 at Indiana Wesleyan University at 1500 Windhorst Way, Greenwood, In 46143.

Notary Day topics include tax advise from an H&R Block Master Tax Advisor, E&O insurance protection advise and Social media marketing strategies. All Attendees will receive 30% off a full year of NotaryAssist service.

Admission is FREE! Register for Indiana Notary Day at http://ow.ly/TYB9O.

The Indiana Notary Association advocates education, networking and Notary law. Learn more about the INA at indynotaries.org.

Indiana Notary Day is sponsored by Legal Shield, Notary Assist, H&R Block, NotaryAct.com

The INA Supports Fi's Transplant Fund
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Update 71
Posted by Julia Sandstrom Von Bargen
17 months ago
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THANK YOU TPT!! October 22, 2015

A giant, heart felt thank you to the Teachers Pay Teachers bloggers for raising and donating $731 to
Fiona's Medical Fund through their product sales. Special thanks to Hilary Lewis of Rockin' Teacher Materials for organizing and facilitating the fundraiser!

Teachers Pay Teachers Fundraiser says…
The teachers at Teachers Pay Teachers wish the very best for Fiona. All our best!
Teachers Pay Teachers Rocks!
Thank you Hilary Lewis!!
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Julia Sandstrom Von Bargen
33 months ago

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$4,091 of $500k goal

Raised by 26 people in 33 months
Created June 19, 2014
Julia Sandstrom Von Bargen  
$20
Anonymous
17 months ago
TF
$731
Teachers Pay Teachers Fundraiser
17 months ago

The teachers at Teachers Pay Teachers wish the very best for Fiona. If more sales come in, there will be more donations. All our best!

$100
Anonymous
17 months ago
$100
Anonymous
18 months ago
RB
$125
Robert Bell
18 months ago

Best wishes....

KP
$25
Kristen Poindexter
18 months ago
$100
Anonymous
24 months ago
$50
Anonymous
25 months ago
JS
$20
John Stigall
25 months ago

Best wishes.

$100
Anonymous
26 months ago
Julia Sandstrom Von Bargen
33 months ago

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