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Life Saving Treatment for Susan

$45,631 of $160,000 goal

Raised by 287 people in 3 months
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 to Chris Kiechel 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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Update 9
Posted by Christopher Kiechel
6 days ago
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1/12/2019 Update:

Hello all you wonderful people!

Thank you for your continued support. By sharing Susan's story, we are up to 640+ shares. That's excellent. Please continue to share and build the support for Susan.

https://www.gofundme.com/life-saving-treatment-for-susan
https://www.facebook.com/SaveSusanK/
https://www.tinyurl.com/SaveSusan
https://www.theplainsman.com/article/2018/11/an-auburn-family-calls-for-help


Special Shoutout to My ISI Family!
I work with a great bunch of people. There is not a single weak link at Incentive Solutions, Inc. (ISI). Everyone knows their role and performs it well. And when a need arises, the Care Committee jumps into action with a flood of tremendous support. Together, you all have raised over $8K for Susan! Thank you, thank you, thank you!


Stressful Week For Susan
This has been an up/down week. Early this week, Susan learned her blood cultures showed that blood taken from her hand was negative, but the blood taken from her port-a-cath was positive for MRSA. Immediately, Infectious Disease started her on IV antibiotics (Daptomycin and later Vancomycin) and yesterday, she underwent surgery to remove her port-a-cath. The good news is that it appears the infection is limited to her port-a-cath and that it did not get into her bloodstream. Early next week, we hope to know how long she will be on IV antibiotics and how this infection will impact her stem cell transplant timeline. Your prayers are welcomed!

As always, thank you for your support.

Sincerely,
Chris (The Husband)
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Update 8
Posted by Christopher Kiechel
10 days ago
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1/8/2019 Update:

The Final Push!
First, thank you one and all for your amazing support! Between GoFundMe and private donations, we have raised $105,000.00 towards Susan's stem cell transplant. That is fantastic! Thank you, thank you, thank you!

Second, the past two months have been hectic for Susan. She herniated the C5 and C6 discs in her neck, then discovered a MRSA infection in the herniated tissue, which spread to her blood stream. She has been on high doses of vancomycin for the last seven weeks, while also drudging through two more IVIG treatments. This has been a physical drain on her body -- BUT not on her spirit! She remains strong in mind and in spirit.

Given all this, her care team of doctors and nurses have all agreed that Susan needs a stem cell transplant sooner, than later. So, everyone has been working very hard to get her physically ready. Everyone has been going above and beyond the call of duty to adjust to Susan's schedule and energy level. And their hardwork is paying off. Recently, she underwent a pulmonary function test (PFT) which she passed with flying colors, which is critical to enduring a stem cell transplant.

In short, the care team is shooting for early February to begin the stem cell transplant process! Which means, you and I have some work to do.

We need to raise the final $50,000.00 by February. We can do this! The best and most effective way to reach that goal is to spread the word. The more people that know about Susan's struggle, the more people will give and share.

Please share the following links with your friends and family, with your church, temple, and synagogue. People want to help, they just need to know how. So, share her story and let's make this happen!

https://www.gofundme.com/life-saving-treatment-for-susan
https://www.facebook.com/SaveSusanK/
https://www.tinyurl.com/SaveSusan
https://www.theplainsman.com/article/2018/11/an-auburn-family-calls-for-help

Thank you!
Chris (The Husband)
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Update 7
Posted by Sloan Keech
29 days ago
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Merry Christmas from the Kiechel family! We are just over $40,000.00 at the time of writing this. Thank you for the continued support!

A lot has happened since the last update. In October, Susan spent the entire month in the hospital due to a MRSA infection in her port-a-cath. Subsequently, her vascular surgeon removed the infected port and inserted a new port higher-up her thigh. Then, the new port was used to infuse IV antibiotics for four weeks.

On November 8th, Susan finally came home. She was grateful to finally sleep in her own bed and spend time with her family. However, she didn’t get to stay home long. Just 5 days later, Susan returned to the hospital in an ambulance. She had severe pain in her neck, so severe that no narcotic could dull the pain. They did a CT scan and a MRI and found she had herniated her C5 and C6 vertebrae in her neck. They also conducted a blood culture, which revealed she had another MRSA infection in her bloodstream. Ultimately, they determined that the MRSA infection had started in the herniated tissue in her neck, which explains why the pain was so severe.

Susan spent almost another month in the hospital, returning home on December 11th. Because Susan has limited locations that can accept new ports, every effort was made to protect her port from the infection. As a result, the infectious disease doctors decided to continue IV antibiotics until December 31st. So, while Susan was home, she had a home health nurse come every day to administer the medication. Her pain has become much less severe, and she is regaining the use of her neck, thankfully.

Unfortunately, for the first time ever, Susan will have to spend Christmas in the hospital. In years past, Susan purposely moved her treatments around so that she could spend Christmas with her family. But due to her many infections and complications this year, she has no choice but to spend the holidays in the hospital. In anticipation, we celebrated Christmas early this year, so Susan could enjoy the love and joy of the giving (and receiving) spirit. One of Susan’s presents was a bobblehead of Coach Hoppa, whom is the head coach of the women’s soccer team at Auburn.

The IVIG treatments are taking a greater toll on Susan’s body each month. Since September, she has spent only 29 days at home. We don’t know how much longer she can keep this up, so we are pushing to get stem cell started in February. We are hoping to raise the rest of the money by January 9th. Between GoFundMe and private donations, we have now reached $100,000.00. We need approximately another $55,000 to pay for the stem cell transplant.

We need to raise this money fast, or Susan may run out of time. Please help us by continuing to share her story. She returned to the hospital yesterday. Let’s give her the best Christmas gift ever, by funding her treatment.

Thank you one and all!
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Update 6
Posted by Sloan Keech
2 months ago
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Hey guys! We are right at $33,000 at the time of writing this.
I'm touched by the amount of support we've gotten. Every person that has heard mom's story either donates or shares, and everyone is sending us some amazing, supporting messages.

But, the word isn't getting out fast enough. Mom can't keep doing this. So, we've decided to try and get Ellen to see mom's story. So, we need everyone's help to tweet Ellen.

Tweet @TheEllenShow one of the following:

@TheEllenShow Please learn about Susan Kiechel's story. She is a title IX warrior and the reason over
350 female soccer players have received full scholarships to Auburn. She is now fighting for life against
an autoimmune disease and needs help.
Story: https://www.theplainsman.com/article/2018/11/an-auburn-family-calls-for-help


@TheEllenShow Susan Kiechel fought for women's rights and created equal opportunity for female athletes at AU. She is the reason over 350 women have gotten full soccer scholarships to AU. Now she is fighting for her life and needs your help.
https://www.theplainsman.com/article/2018/11/an-auburn-family-calls-for-help


@TheEllenShow Susan Kiechel is a mother of 3 and women's rights advocate that fought for Title IX and won. She is now fighting an autoimmune disease and needs help funding her life-saving treatment.

https://www.theplainsman.com/article/2018/11/an-auburn-family-calls-for-help
https://www.gofundme.com/life-saving-treatment-for-susan


Additionally, we need more people to nominate Susan:

http://send.ellentv.com/be-on-the-show/433/

Thank you again for all your help. Let's save Susan!
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$45,631 of $160,000 goal

Raised by 287 people in 3 months
Created October 2, 2018
Fundraising Team
on behalf of Christopher Kiechel
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