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Bass faces Myasthenia Gravis, seeks treatment in Russia


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Video by Hailey Hess and Mia Ford.

By Sarah VanderPol
Photographer
@sarahvanderpol

Graphic by Rachel Buigas-Lopez

Graphic by Rachel Buigas-Lopez

For new college student Mikayla Bass, life was good. Stepping into college as a junior and receiving a scholarship to play college volleyball at St. Mary’s University in San Antonio – Mikayla couldn’t have been happier.

However, in January, Mikayla’s world took an unexpected turn, causing her life to completely change.

“In November, our mindset was that she was as happy as she could be, in a wonderful place, playing on the court, loving life, doing her college kid thing, president of the Fellowship of Christian Athletes, just really blossoming as a young lady. Two months later she was too weak to brush her own teeth and we didn’t know why,” said Kelly Bass, Mikayla’s mother.

Mikayla, a 2012 Coppell High School graduate, had begun experiencing some weird symptoms while at St. Mary’s : trouble eating, trouble with her vision, and the temporary paralyzation of her finger, but dismissed them. After they continued, she called her mom. Together, they went to the doctor only to be told that Mikayla was on drugs, which was far from the truth. Mikayla went about her college kid life and returned to school.

After returning to practice with her team at St. Mary’s after Christmas break, Mikayla was unable to complete the warm up without beginning to wheeze and hyperventilate. At that point, she knew that the strange symptoms she had been experiencing were serious and something was wrong.

She called her mother and they found another doctor. This one knew exactly what was going on. After only a few minutes, he diagnosed Mikayla with Myasthenia Gravis.

“I had never heard of MG so at the time I just thought it was a bunch of mumbo jumbo and I was going to be fine,” Mikayla said. “When reality set in, it became extremely hard to deal with because I realized that the person I had been was now dead and I was having to start all over.”

Myasthenia Gravis is a rare autoimmune disease attacking the receptors of the muscles that only 25,000 Americans have. When one’s brain tells the muscles to move, it communicates through a connector point. With Myasthenia, that connector point is damaged. Since the connector is damaged, the effects fluctuate.

“I could be normal now, and in two minutes I could be paralyzed. It’s minute to minute, hour to hour, day to day. It changes all the time,” Mikayla said.

The disease affects one’s ability to move any of their voluntary muscles. The scariest part of it all is that the disease has no known cure. In fact, the mainstream medical system knows hardly anything about Myasthenia Gravis at all.

“She had an episode a couple of weeks ago where she went to the hospital and in the ambulance, I had to explain to the ER guy what it was, the side effects and other things they needed to know, look for, and understand. For example, she can’t have magnesium because it could make the muscles way too weak and they would just shut down and she would not be able to breathe. I’m having to explain everything to EMTs, and thats nerve racking,” Mrs. Bass said.

The only research the medical world has on Myasthenia is case studies. Since every Myasthenic patient is affected differently, these case studies tell them nothing. Due to the fact that Myasthenia does affect everyone differently, it is often referred to as the snowflake disease. Just as every snowflake is shaped differently, every patient experiences different effects at different times.

“There are days that she can appear pretty normal on the outside and then what people don’t realize is what’s going on in the inside. I call it the iceberg. The top of the iceberg you can see a little bit of what’s going on but underneath the water, theres all these things that are happening that you can’t see,” Mrs. Bass said.

In the past few months, Mikayla, who many in Coppell remember as Bear Bass, has been on several different medicines and has had a Thymectomy, a robotic surgery in which her thymus, which is where your immune system comes from, was removed. The surgery had a 30 percent chance of remission, but that has not happened, and while the medicines have been helping some, they have also caused her to gain weight along with other unpleasant side effects. Their best shot now is a Hematopoietic Stem Cell Transplant in Russia.

“I’m 20 years old, I could live another 60 years, I don’t want to have to be on drugs that may not always work for the rest of my life,” Mikayla said. “Even though Russia is going to be really tough and the stuff I’m going to go through is going to suck, that could be the end of it.”

The Stem Cell Transplant while risky, could also be Mikayla’s only shot at being “cured”. Once in Russia, Mikayla would have stem cells removed from her chest bones and frozen while she underwent four rounds of chemotherapy which would wipe out her immune system completely. She would then spend eight days in an isolation room until doctors reinserted the stem cells. Following that, she would spend the rest of her time in recovery, rebuilding and strengthening her new immune system.

Another woman, Sheli Godbold, that the Bass’s had the opportunity to talk with, had the procedure and her story gave them hope. Godbold, a former police officer, went to Russia in a wheelchair and six weeks later donated that same wheelchair after walking out of the hospital.

“The difference in her alone, her story alone, is miraculous to say the least,” Mrs. Bass said. “I do believe that this procedure is going to give Mikayla really the only shot that we can find for the word cure.”

While the procedure could be the cure Mikayla needs, it is expensive, $50,000. The Bass family has started many fundraising efforts in an attempt to obtain the funds for the transplantation. The most recent fundraising effort is the new website, www.battleforbear.com.

Donations along with T-shirt and bracelet purchases from the website are all going towards the procedure. One can also sign up for the upcoming golf tournament on November 10th, enter into a raffle to win a 2005 Mercedes, or donate items to the silent auction held in Mikayla’s honor. All the profits from these events will go directly towards Mikayla’s expenses for the procedure in Russia.

“It is incredible to see all these people stepping up, everyone has such amazing hearts and there are so many people, so many I can’t even name them all, that have been nothing but amazing,” Mikayla said.

Not only are people making an impact on Mikayla’s life, but she is making an impact on the lives of those around her as well.

“Bear is one of the most hilarious, loving, Christ-like people I’ve had the pleasure of knowing. She is a beautiful girl with a huge heart for others who inspires me to live as a fully devoted servant of the Lord,” said 2014 CHS graduate Lindsay Stivers, a friend and former Coppell volleyball teammate. “I know that I would not be the person I am today without Bear and the impact that she’s had on me. I feel so blessed to know her and to be able to say that she is my sister in Christ.”

Mikayla also made a huge impact at Coppell High School. She made a name for herself both academically and athletically. She graduated with not only her diploma, but her associates degree as well, and was a member of the Principal Advisory Committee. Mikayla is also the only Coppell athlete to ever win state in two sports, soccer and volleyball. She was a star athlete and it showed; she has two medals and rings along with her scholarship to prove it.

“It has been tough and extremely sad having to let go of that part of my life. I wish I could go back to it but I don’t know if that’s ever going to be able to be a part of my life again,” Mikayla said. “Not being able to work out makes me feel like a caged animal at times. I just want to be able to go for a run or something but if I do I know I will just eat it after the second step.”

While the whole experience has been tough on the family, they are learning to make the best of it.

“I learn daily from this experience. I’ve learned God’s grace and his comfort. I’ve had to learn that he loves her more than I do even though that doesn’t seem possible to me, but I know it’s true and I have to daily give it up. He is able to make things happen that I couldn’t even imagine,” Mrs. Bass said. “It’s been a long journey in a short amount of time. It’s hard for me to believe she hasn’t even been diagnosed a full year yet, I feel like we have lived a life time. It’s just been so overwhelming in so many ways, both good and bad. Even though it is incurable, God is not incurable. He can definitely overcome Myasthenia Gravis and much more.”

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2 Comments

2 Responses to “Bass faces Myasthenia Gravis, seeks treatment in Russia”

  1. Walter foster on July 10th, 2018 2:02 am

    I am a female patient with Myasthenia Gravis for 30 years and I have suffered tremendously because of this disorder. I had a thymectomy twenty five years ago and still have symptoms of MG. I came across Best Health Herbal Centre website after so many years researched through the internet. I was so desperate to find a way to treat this disorder naturally. Thank God for leading me to Best Health Herbal Centre. I started using Best Health Herbal Centre MG herbal formula this year. After 10 weeks of usage, my MG was totally reversed, symptoms like muscle weakness, difficulty swallowing, double vision, fatigue, impaired voice, or shortness of breath disappeared completely..Am now 67 years old living MG free. To know more about Best Health Herbal Centre visit w w w besthealthherbalcentre c o m Thanks..

  2. Walter foster on July 10th, 2018 2:02 am

    HERBL

    I am a female patient with Myasthenia Gravis for 30 years and I have suffered tremendously because of this disorder. I had a thymectomy twenty five years ago and still have symptoms of MG. I came across Best Health Herbal Centre website after so many years researched through the internet. I was so desperate to find a way to treat this disorder naturally. Thank God for leading me to Best Health Herbal Centre. I started using Best Health Herbal Centre MG herbal formula this year. After 10 weeks of usage, my MG was totally reversed, symptoms like muscle weakness, difficulty swallowing, double vision, fatigue, impaired voice, or shortness of breath disappeared completely.

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