Mike is a wonderful son, husband, brother, uncle and self proclaimed computer geek. Mike spends his free time building and repairing computers. He has rebooted systems and recovered lost data for countless friends over the years. He hosts his own websites, enjoys blogging about technology, politics, and life with Multiple Sclerosis. He loves the outdoors and can be found trail riding for miles on his treasured mountain bikes or kayaking his way down the fox river. Mike was a lot of things before he came upon his most important role, an incredible father to his three beautiful children, Kenzie (10), Korben (7), and Keira (3) who absolutely adore him. The pillar of his family, Mike has spent the last decade as a stay at home Dad. He juggles housework and homework to cooking and carpooling with the greatest of ease.
Thankfully, for the past 12 years we have managed to adapt to life with MS. Although, Mike struggled with symptoms often, he never complained about the muscle spasms, cognitive issues, and fatigue we now know he was dealing with.
Unfortunately, on Valentine's Day 2019 we learned just how devastating MS can be. First, Mike was experiencing blurred vision in his right eye. Next, came extreme fatigue and difficulty walking. By the third day his cognitive function, coordination, balance, strength, and mobility were all greatly effected. An emergent MRI of his brain showed multiple areas of active MS lesions. He was immediately admitted to Northwest Community Hospital for a 5-day course of intravenous steroids. After discharge Mike experienced very little improvement in his debilitating symptoms. Over the next couple of weeks Mike's condition continued to decline. He was admitting once again to undergo plasmapheresis, a process that filters the blood and removes harmful antibodies, very similar to dialysis. Mike was scheduled to have 7 plasma transfers over the course of 3 weeks. On the morning of St. Patrick’s Day he woke with total paralysis of the right side of his body and difficulty with speech and communication. Mike's Neurologist had exhausted all options available to halt further progression of the disease.
Ultimately, he transferred care of Mike to another MS specialist at Rush University Medical Center. It was there where he was hospitalized for over 3 weeks and treated much more aggressively. Regrettably, there were multiple complications. Anything that could go wrong, did. First, Mike developed aspiration pneumonia due to difficulty with swallowing foods and liquids. A rigorous course of chemotherapy caused an abnormal heart rate known as AFib, that required intervention with electric shock. Next, a Pulmonary Embolism (blood clot in the lungs) followed by clots in both lower legs further complicated his condition. Once he was deemed stable enough, Mike was transferred to Rush’s Rehabilitation Hospital. He worked tirelessly daily to regaining enough strength to return home on April 12, 2019. We were thrilled to have him home and have our family back together once again.
However, our happiness was short lived as Mike's condition continued to decline once again. He began suffering from painful paroxysmal tonic spasms (similar to seizures) on the right side of his body several times a day. Even the historically successful treatments at Rush were not enough to prevent further progression of this horrible disease. Next, Mike's Neurologist sent him to Northwestern Memorial Hospital (NWMH) to be seen by the Chief of the Division of Immunotherapy and Autoimmune Diseases (DIAD). After much deliberation it was decided that Mike’s last hope for remission and recovery is a Hematopoietic Stem Cell Transplant (HSCT) at NWMH. The procedure involves the harvesting of stem cells from the body. After chemotherapy drugs are used to wipe out the old immune system, re-implantation of those cells occurs to grow a new immune system, one without MS. Fortunately, Mike was just recently evaluated and determined to be an excellent candidate for the HSCT procedure. The doctor spoke of remission of the disease to a point where Mike would no longer require medication to treat MS. He even mentioned repair and reversal of damage that he already been done. The staff of the DIAD are monitoring Mike closely while treating him monthly with a strict drug regimen to hold him at his current state of health until he can receive the HSCT procedure in October of 2019.
As you can imagine, all of this has caused significant emotional distress for Mike, Shelby, and the rest of their family. Although, FMLA allowed for Shelby to be by Mike's side throughout this ordeal, she was not compensated for her time away from work. Multiple Sclerosis has been devastating and has completely wiped out their finances. They were recently informed that BCBS of Illinois will not cover the cost of the stem cell transplant.
We would like to be able to, with the help of the community, collect $225,000 to pay for the medical bills they've already accumulated, fund Mike’s stem cell transplant, as well as his rehabilitation and recovery. We are also asking for prayers for Mike and his family as he begins his next treatment journey. We thank you from the bottom of our hearts for helping our son and his family. Ed & Debbie Johnston
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