Fighting EDS Kyphoscoliosis

Michelle was diagnosed with scoliosis as an adolescent. However, unlike others with this diagnosis, at 19 her spine continued to curve and rotate her ribs, causing compression of her lungs and years later, a diagnosis of a very rare genetic disorder called Ehlers-Danlos Syndrome type VI (Kyphoscoliosis type). In 2003, Dr. Lenke performed her first spinal fusion at St. Louis Children's Hospital, fusing her spine from T3-L1 to stop her ribs from crushing her lungs. Typically scoliosis will stop progressing once an adolescent's growth plates close, at around 16 or 17 years old. Since Michelle's type of scoliosis is congenital, it continued to twist and curve her spine even after she stopped growing. In addition to this major surgery, she continued battling other health issues within her body that would remain undiagnosed for years.

Feeling like she was in a nonstop fight with her body only made her more determined to stay strong, fight through the pain, and overcome the obstacles she would face throughout the upcoming years. Michelle continued her everyday battles but never let anything stop her from doing what she wanted. In 2006 she became a mother to a beautiful baby girl, Emma Rose, who would later welcome little sister Alivia Renee in 2008. Michelle fought to be like everyone else, working full time, attending college full time, and enjoying being a mommy to two amazing little angels. Busy, long, stressful days were followed by evenings of extreme exhaustion. Michelle began loosing feeling in her left arm and hand but not thinking much of it, she continued to be the best wife and mother she could be.

Following months of numbness, weakness, and pain in 2011, Michelle finally went to see the doctor who brought news of needing an anterior cervical fusion due to ruptured and herniated discs at C5-C7. After this little bump in the road, life continued on as it had before until early 2013. A cross country move from St. Louis, Missouri to Chandler, Arizona in late 2012 ended with Michelle experiencing the same numbness and pain in her neck and arms. Again, surgery was the only option to correct another herniated disc, this time fusing C4-C5. This surgery was much like the last until complications arose and her hair began to fall out. Doctors performed test after test, finally diagnosing Michelle with Alopecia Areata, an autoimmune disorder that causes her body to attack her own hair follicles. There is no cure and no way of knowing when or if her hair would begin growing back. As more and more hair fell out, Michelle's only option was to shave her head. This made Michelle feel free and as always, she always had a positive attitude toward her situation.

After additional complications with healing arose and continued exhaustion, Michelle was sent to a Hem/Onc specialist who diagnosed her with Iron Deficiency Anemia. Michelle's body was unable to store Iron, thus she began weekly Iron infusions. Every Wednesday Michelle would have to go into the office to have an IV placed in order to receive IV Iron so her body could try to function like a 29 year old's should.

Even with the weekly Iron infusions, complications continued and more doctors did more tests, leaving more bills for Michelle to try to pay on her husband's salary as a FedEx driver. These tests would lead Dr. Theodore at Barrows to discover the failure of the prior fusion performed in 2013.

In February of this year (2014) Michelle underwent her fourth spinal fusion from C3-C6 to correct the failed fusion from 2013. This time Dr Theodore had to take a posterior approach. Complications arose in the hospital leaving Michelle in the ICU for 4 days of her 8 day hospitalization. This resulted in major medical bills that again, were impossible to pay even with her health insurance covering a portion of the bill since her plan had such high deductibles and out of pocket member liability.

Still doing all she can to stay positive, Michelle's 6 week follow up appointment did not go well as she found that her fusion had yet again failed. Doctors began to suspect an issue with her bones since her fusions continued to fail. She was sent to have more tests done by more doctors. The end result led to the diagnosis of osteopenia and Ehlers-Danlos Syndrome, a connective tissue disorder. Yet even with this difficult news, and the realization that another surgery was awaiting, Michelle refused to let any of this bring her down. As always, she continued to keep a positive attitude, fighting to climb over any obstacle that got in her way, always with a smile on her face. She had two very precious reasons to fight through the pain every day, her 5 and 8 year old angels, Alivia and Emma.

In May of this year (2014) Michelle underwent her 5th spinal fusion from C2-T2, leaving her spine fused all the way from C2-L1. As she continues to fight her body every day, her medical bills and prescription costs continue to pile up. She can no longer afford the Iron infusions she needs for her body to function normally or her pain medications to alleviate the extreme pain she suffers from all day, everyday. Due to the effects on her joints from her Ehlers-Danlos Syndrome and her many spinal fusion surgeries, arthritis is an everyday reminder of what she's been through at such a young age.

Michelle and her family are asking for your support to help her continual recovery from the many surgeries and newly diagnosed health issues she faces daily. Being very independent her whole life, it was very difficult for Michelle to reach out and ask for help...But sometimes we have to realize that we were not created to go walk this journey alone...we must be strong enough to stand alone, smart enough to know when we need help, and brave enough to ask for it...

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Organizer

Michelle Wheeldon 
Organizer
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