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Battling Neuromyelitis Optica

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My name is Jamie. Adam and I have been together since we were 18 years old (almost 17 years! Whew!). We have two wonderful  sons, Anthony and Justin. We are just like any normal happy and loving family, Adam just happens to have NMO. Many people have never even heard of Neuromyelitis  Optica. It is a rare autoimmune disorder that causes the body to attack the spinal cord and optic nerves, which can cause blindness, paralysis and other devestating  effects. Adam and myself had never heard of it either, in 2015 everything changed.

It was the beginning of the year, everything was perfect. We had saved up for a down payment on our fist home and were searching for the perfect little house. The boys were looking forward to getting their own rooms. We were happy at our jobs. Everything seemed to be falling into place. Then, things stated to change.

We had a big snowfall one evening, so Adam shoveled out the driveway way. The next morning he started having back pain. We thought maybe he had hurt his self shoveling snow. The pain and numbness continued to get worse, so we went to the doctor. Adam was referred to a spine specialist. This is when things started to get scary. The doctor said MRIs showed swelling in Adams spinal cord, and he was being referred to an oncologist and neurosurgeon. They thought Adam had a large and potentially fatal tumor inside of his spinal cord. I can't explain how devestating it was to hear that the love of my life and father of my sons may die. Life began to be a series of doctors appointments, tests, and MRIs. Adams physically continued to worsen, he lost feeling in his right leg and was dealing with unbearable pain. We very quickly drained our savings to meet Adams high deductible with his insurance. Adam couldn't work and I had to take a lot of time off to help him get to his appointments. Then, things took another turn.

Some of Adam's test results showed he may have an autoimmune disease. It was such a relief knowing that he may not have cancer. We went to a neurologist who specializes in autoimmune disorders. Over the next few months there were more tests and a trip to Cleveland Clinic. Adam finally got his diagnosis: Neuromyelitis Optica. We had no idea what this was. The doctor explained that his immune system had attacked his his spinal cord and it and there was extensive damage that would likely not heal. Adam is also at risk for having future attacks, which can cause him to go blind and even die. He will have to have infusions of immunosuppressive drugs for the rest of his life. These infusions only decrease the chance for relapses, there is no current cure for NMO. Adam has to use a wheelchair and has trouble functioning day to day due to the severity of his condition. He is unable to work.

Adam is currently in the process of applying for disability, but this is a long process and we will likely be waiting another year just to hear if he will get it or not. Our family has been living on my sole income for the last couple years. No matter how many hours I work I just can't cover all the bills. We have been close to getting evicted many times and had our lights and water shut off numerous times. Every paycheck I have to make a choice of what I can sacrifice.  Adam is also in desperate need of a way to transport his wheelchair. His insurance did provide him an electric wheel chair, but it weighs a few hundred pounds and we have no way to transport it. The carriers for them cost over a thousand dollars. We made this go fund me to kindly ask for help. If anyone is able to help our family we would be so grateful from the bottom of our hearts. If you are unable we still thank you for reading our story, and have nothing but the best wishes for everyone.

With love from the Carroll family


Jamie Zaepfel
Fairdale, KY

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