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Life Saving Treatment for Susan

$46,378 of $160,000 goal

Raised by 305 people in 5 months
Created October 2, 2018
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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Hello!
Today I want to bring attention to a website I created, called “Life-Saving Loot” ( www.lifesavingloot.com). Basically, I am a huge nerd, and I’ve been subscribed to Loot Crate for the last 4-5 years. Loot Crate sends random nerdy items every month. Most months there’s usually an item or two that I don’t have much interest in, and for all these years I’ve just kept them in the closet.

Now I’ve finally taken them all out and listed them on this website to sell! All profits go to Susan’s treatment fund. This is a great way to bring in more donations for Susan. I am uploading new products every day, and friends and family have been donating many items for me to sell (including a couple hundred VHS tapes).

I’m also happy to announce that today is the start of our first sale. Valid 2/7/19 – 2/10/19 use offer code HERO to get 10% off your order!

We still need about $40,000 to pay for Susan’s treatment. So, help us spread the word, and go buy some loot!

Facebook: https://www.facebook.com/lifesavingloot
Instagram: https://www.instagram.com/lifesavingloot/
Twitter: https://twitter.com/loot_life
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1/19/2019 Update:

A Great Week!
The blood cultures taken after the port-a-cath removal remained negative for the entire five-day observation period. That means the MRSA infection was limited to the port. That is great news!

Normally, Infectious Disease would recommend a 2-week course of IV antibiotics based on the above results...BUT...with Susan's history, they recommended a 4-week course. That works for us!

This means the stem cell transplant will be postponed until March.

With the negative cultures, a new port-a-cath was implanted on Friday with complete success. Hopefully, this is the very last port-a-cath Susan will need. We will use it for her current IVIG treatment, for her IV antibiotics for the next three weeks, for her next (and final) IVIG treatment in February, and finally for her stem cell transplant in March.


Thank you!
Your prayers to a loving and wonderful GOD work. So many things have fallen into place. So many people have come together. Providence is afoot! Thank you for your prayers. Thank you for your support. Thank you for being part of GOD's plan.


Keep Sharing!
We are a growing community and we are closing-in on our goal. We have tacit approval to begin the stem cell transplant in March, but we need your help to get over the final hump. Together, we have raised just over $110,000.00 (via GoFundMe and private donations) for Susan. We need another $40,000.00.

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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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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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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Raised by 305 people in 5 months
Created October 2, 2018
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