'Sweet' 5K race to benefit Utah County mom battling rare disease

By Arianne Brown, ksl.com Contributor | Posted - Jul 22nd, 2013 @ 7:32pm


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EAGLE MOUNTAIN — In April 2012, Mistie Gillespie, an Eagle Mountain wife and mother of two, had what she thought was a “run-of-the-mill spring cold.” Having two school-aged children, it was not uncommon to catch the coughs and colds that were brought home from time to time.

Gillespie thought nothing more of it and went about her daily routine of volunteering in her boys' classrooms and continuing her busy yet satisfying life as a stay-at-home mom. However, a few weeks passed and the cough got much worse, with coughs so powerful they resulted in three broken ribs.

At about Mother's Day 2012 — after an episode of severe coughing, difficulty breathing and extreme pain — she went to an emergency room. She was sent home with no answers and an antibiotic that solved nothing.

What is myasthenia gravis?

Myasthenia gravis is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control. It is caused by a breakdown in the normal communication between nerves and muscles. Symptoms include weakness in arm and leg muscles, double vision, drooping eyelids and difficulties with speech, chewing, swallowing and breathing. (Source: Mayo Clinic)

Problems persisted, and after many chest scans and tests, it was found that Gillespie had a tumor in her chest. As devastating as this news was, she was relieved to find that the tumor was benign and that it was not located on her breast or lungs but on her thymus. Surgery to remove the tumor was necessary, but the surgeon didn't want to operate while she was still coughing.

The cough never subsided, and upon further testing, it was found that Gillespie's sinus cavities were almost completely blocked, requiring her to undergo sinus surgery. The surgery was performed at South Valley ENT by Dr. Ryan Gilbert, and although the surgery seemed to be helping, it wasn't long before her problems returned. From August until December 2012, Gillespie was given a long list of antibiotics and low-dose steroids, none of which helped her feel better.

Unable to regain her health, and after continuing to battle coughs and flu-related symptoms, Gillespie's doctors decided that the tumor needed to be removed regardless.

After the surgery, they found the tumor had a "cancer marker," even though it was not malignant. However, having removed the tumor, the doctors were hopeful about her condition. She was diagnosed with bronchiectasis and chronic sinusitis and was given yet another round of antibiotics and steroids. Gillespie finally began to feel better.


"One of the most difficult things about all of this is that I haven't been able to be the kind of mom, wife, sister, daughter, friend and neighbor that I like to be."

Sadly, after only a short period of time, and just over a year after her initial “cough,” symptoms began to return. Fearing there was something that may be contaminating her home, she and her husband had it tested for mold and traces of meth. The results came back clean.

At the end of May 2013, Gillespie felt her body deteriorating. She couldn't walk more than a few steps without getting winded. Things got even worse. During the first week of June, she woke up with two fingers on her left hand not working. She also found that her vision was off and that her respiratory problems were still very present. At the end of that week, as she got ready for bed, she was surprised to see that her left eye was dramatically drooping. Fearing that she had suffered a stroke, Gillespie told her husband that she needed to go to the emergency room.

At the hospital, doctors performed a brain CT that revealed no signs of a stroke or brain tumor. Relieved but still worried, the doctors suspected something called myasthenia gravis, and performed more blood work.

While awaiting the results, Gillespie's condition worsened. Her left hand still wouldn't work, she was unable to swallow, and found that most of her face and mouth muscles quit working. She described feeling sad because she wasn't even able to blow up a balloon for her 5-year-old son, Logan. She was also losing the ability to cough, which was trapping all of the congestion in her lungs — making breathing even more difficult.

Mistie Gillespie 5K Cake Walk & Family Fun Night

Sponsored by The Cupcake Charity

When: August 9
Where: 5:30 p.m. at Nolan Park (7862 N Tinamous Rd, Eagle Mountain)
What: 5K "Cupcake Division" (7 p.m.) and Kids 1K Fun Run (8 p.m.) — food and games available throughout
All proceeds to benefit the Gillespie family

Finally, after days of waiting and suffering through her debilitating condition, Gillespie's doctors confirmed the diagnosis of myasthenia gravis, or “grave muscle,” an autoimmune disorder that produces antibodies that attack the muscle receptors. Although devastated by the news, Gillespie and her family were relieved to finally have an answer.

Even with the relief of answers, Gillespie and her family still have a long and difficult road ahead. She is currently on medications and therapies helping to remedy much (not all) of her condition. This will be a reality for years to come. Those medical procedures also have come with a hefty price tag.

“One of the most difficult things about all of this is that I haven’t been able to be the kind of mom, wife, sister, daughter, friend and neighbor that I like to be. The physical struggles are immense right now. The financial struggles are considerable now. The emotional struggle knowing how these things negatively affect my husband and my two young sons seem insurmountable some days," Gillespie said. "I have a hard time recognizing the 'me' I see in the mirror now. My smile is different, my sense of what I can do is different. I have to learn how to be a new version of me. I love to help others, volunteer at school, help out neighbors. I’ve been unable to for a long time. It’s been very humbling to be on the receiving end of service.”

The Cupcake Charity, a local charity based out of Eagle Mountain, has rallied to help Gillespie and her family. With the motto, "Adding sweetness to life," this charity holds events throughout the year to help families in need and holds an annual 5K to benefit one such family. This year, it will benefit the Gillespies.

This particular 5K comes with a sweet twist — runners can subtract two minutes from their overall time with each cupcake eaten at the halfway point.

The event will be held Aug. 9. The cost is $10 for the 5K and $5 for a kids Fun Run. Family passes will also be available. All of the proceeds will go to Gillespie and her family.

For more information on Gillespie's condition and how to help, CLICK HERE. There is also *a donation account set up at Chase Bank under the name Mistie K. Gillespie.

* Disclaimer: ksl.com has not verified the accuracy of the information provided with respect to the account nor does ksl.com assure that the monies deposited will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit or donation you should consult your own advisors and otherwise proceed at your own risk.*

Arianne Brown is a graduate of SUU, mother to five young kids, and an avid runner. Contact her at ariannebrown1@gmail.com, go to her blog at timetofititin.com or follow her on twitter @arimom5.

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