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Life Saving Treatment for Susan

$33,112 of $160,000 goal

Raised by 212 people in 1 month
Created October 2, 2018
Fundraising Team
on behalf of Christopher Kiechel
I would like for you to meet Susan.  Susan and I met in elementary school and she is one of the most remarkable people I have ever met.  She is, by far, the fiercest fighter I have ever known.  Susan is a wife of 26 years and the mother of three children- Christian age 25, Joshua age 23, and Sloan age 21.

Growing up, Susan was alway active in sports.  Throughout Middle School and High School she played on the basketball, softball, and soccer teams.  At Auburn University, Susan played on the intramural soccer team.  The school did not have a Varsity Women’s Soccer team.  Susan saw the injustice in the difference of funding for men’s and women’s sports teams and she did something about it.  After two years of research, she determined that 12% of funds were being used for women’s sports teams while half the student population was female.  She also polled women on campus and found ample support for a women’s varsity soccer team.  She then appealed to the university to implement a varsity soccer team.  Upon their refusal, Susan took the issue to the Office of Civil Rights at the Education Department and sued Auburn under Title IX of the federal education code which bars discrimination on the basis of gender.  The University settled out of court in 1993 and agreed to fund a women’s varsity soccer team.  At this point, Susan was no longer eligible to play but today Auburn has a first class women’s varsity soccer team.  Recently, Susan returned to Auburn to see the team play on the field she helped to build.  She also bestowed the honor of naming rights to the field (that she held but never used) to current coach, Karen Hoppa.

I tell you this story so you have a glimpse of the fighter that is Susan Kiechel.  Susan is now in a different fight - she is fighting for her life.

You see, in December 2000 Susan began experiencing problems picking up her feet.  This was devastating to a star athlete.  After many tests, Susan was diagnosed with CMTX.  This is a genetically inherited, rare, progressive neurological disease that affects the myelin sheath that wraps around the peripheral nerves that control muscles and causes it to slowly shred apart.  Over time it causes the loss of normal function to the lower legs/feet and hands/arms.  Within 4 months she required leg braces and forearm crutches to walk.  The progression of her disease was much quicker and more severe than expected, so she sought additional care from the CMT clinic at Wayne State in Detroit in July 2001.  The specialists there quickly realized something wasn’t right and began further, more extensive testing.  Her illness was progressing too quickly and becoming too severe to be explained only by the CMT.

In July 2001, Susan was diagnosed with another rare neurological disease called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy).  The CIDP was in addition to the CMT.  Susan was now fighting two rare and progressive neurological diseases.  CIDP is an autoimmune disease that causes the immune system to think the myelin sheath around the nerves is a foreign body and causes the body’s immune system to aggressively attack it.  In most cases, CIDP only affects the limbs, though it generally causes paralysis.  However, in 5-10% of cases, CIDP progresses to affect the trunk and becomes a life threatening illness because it will affect the nerves around the vital organs.  In December 2002, Susan joined the 5-10% of CIDP patients with a life threatening version of the disease.

To slow the progression of  CIDP, Susan began Intravenous immunoglobulin (IVIG) treatments on September 12, 2001.  These treatments require a hospital stay every 28 days.  Susan was determined to fight to slow the progression of these diseases so her children would have a mother alive to raise them.  While the treatments have slowed the progression and kept her alive, they have come at an extremely high price. Each month, the disease is able to make some progress.  The IVIG slows the progress but it does not stop it.  Complications of IVIG treatment include stripping the body of magnesium, Vitamin D, and iron.  To counter this, Susan must receive multiple infusions of magnesium and iron each month along with countless other medications to treat the side effects of the IVIG treatment.  Also, the IVIG treatments induce meningitis which is the swelling of the membrane surrounding the brain and spinal cord.  This swelling threatens Susan life constantly and causes excruciating pain.  Each month, Susan’s neurological team walks the line of giving enough treatment to keep her alive but not enough that it does more harm. 

Susan has endured 232 monthly treatments.  This far surpasses the amount of IVIG treatments any other patient in the world has completed.  While the treatments have slowed the progression of the CIDP, they are also damaging her body every month.  Susan’s body can not withstand many more treatments.  She will die soon.

Susan has fought every day for over 17 years to stay alive until a treatment could be found.  That day has arrived.  Clinical trials show Stem Cell Transplant is a very effective treatment for her neurological disease.  She has gone through all the testing phases and has been APPROVED by doctors in Charlotte to received a Stem Cell Transplant.  This procedure will save her life.  It will end her 17 year struggle.  It will return her to her husband and children.  It will help her lead a normal life for the first time in 20 years.  The only thing standing in the way…….money.  Processing the stem cell transplant through insurance is not an option.  The only option the hospital is providing Susan is an upfront cash payment. Please help us raise the money for Susan to receive this Stem Cell Transplant.  Please don’t let money be the reason a wife, mother, advocate, fighter, hero dies.


We thank you for your participation.  Please donate and please spread the word.  To us, you too will join the rank of a hero.
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Hello again!
We are just under $30,000 at the time of writing this! Great job everybody! Thank you to everyone who continues to share and donate.

Last thursday, Mom was in a local newspaper here in Auburn. Today, they uploaded the article online so I can share it with everyone!

The article can be found here: https://www.theplainsman.com/article/2018/11/an-auburn-family-calls-for-help

I also have created a new facebook page, in hopes that it will let me better circulate mom's story. If you can take a moment to go like it, that will help spread the word even further.
https://www.facebook.com/SaveSusanK/

Mom is finally home after an almost 30-day hospital stay. This weekend there is a home football game, so I will be handing out flyers and making sure all the tailgaters know mom's amazing story.

Thanks again to everyone. You are all heroes for helping mom out. I will never be able to express how grateful we are for all the love and support we have been receiving. <3
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Hello again!

First, we have reached $16k! Thank you so much for everyone who has shared and donated to this point.

I have made another video, this one showcases how my mom fought for women's rights at auburn university. She sued the school for violating title IX. She won, and the university had to create the women's soccer team. She helped pave the way for other women to win Title IX lawsuits.

I've noticed the hardest part about this is spreading it around. It's easy to pass over/ignore a gofundme, because so many people are raising money for all kinds of reasons. So I thought I'd make a list about why mom stands out.

-Susan has been sick for 18 years. She was only given 3 years to live when she was first diagnosed. She has defied every odd to get where she is.

-Susan is the reason Auburn has a women's soccer team (which is really good btw). She fought the university, and defied those odds as well (everyone laughed at her lawsuit and thought she wouldn't win). This lawsuit also paved the way for other women to fight against Title IX violations.

-Susan advocated for others before Auburn too. In high school, she lost friends to suicide. So, she started her own suicide prevention program. She spoke to teenagers about suicide and mental health, and provided resources to them. She named the program "That's Hope"

-She is the mother of 3 children. We have seen her slowly die all these years, with no hope of a cure, or her living much longer. I finally feel like my mom will get to see me grow and succeed.

-Susan will always been an advocate for others. I can guarantee if/when she wins this fight against CIDP, she will go out and start advocating for others again. Women's right, mental health, and now chronic illness. she has the ability to advocate for them all, and to help so many others.



I plan on emailing this to many news agencies this week and label it something like "Civil rights advocate fighting for life-saving treatment" or something. If anyone has any other ideas how to spread this wider, let me know. I'm also sending it to auburn's alumni network, and going to reach out to some people on the soccer team.

As always, thank you for everyone helping out. I'm determined to get my mom the treatment she needs. She's fought this long; we are not going to let it end just because of money.
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Hello Everybody!

Mom had surgery yesterday. They removed her old port, and put a new one in about 3 inches above where the old one was in her leg. Since her old one was so infected, they could not close the wound for it. So Mom will be in the hospital for a while, since they have to pack and unpack the wound with gauze often.

This will be port #13. Mom can't get to #14. She has had so many ports, so she has a large amount of scar tissue and occlusion. This means finding a route to thread a line from her port to her heart is hard, if not impossible. Our wonderful surgeon was able to find a way this time, but we can't guarantee that next time.

I have created a new video for everyone to share. It lists mom's impressive stats, like how many access points she has had, and how much her treatments have cost her.

Thank you so much for everyone who has shared and donated. Please keep it up. We need this to get big to save her life.
-Sloan
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10/7/18 Update:
Susan had to go to the ER on Friday, 10/5. She had only been home from IVIG treatment for 36 hours. She has developed an infection in or around the port in her leg. She has been admitted to the hospital and is receiving IV antibiotics. This is further evidence that she is running out of time to acquire her stem cell transplant. Her body is clearly showing it can't take much more. Please continue to share and give. We may not have much more of a window of opportunity for Susan to receive this treatment and save her life.
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$33,112 of $160,000 goal

Raised by 212 people in 1 month
Created October 2, 2018
Fundraising Team
on behalf of Christopher Kiechel
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