Let me begin my  story…

In 2009, I was captain on the football  team, a long-snapper and linebacker for our team. At the start of the season, I had a bad viral infection and had to  miss some of the early games.  After one of the games I played in, the next morning I couldn”t remember who had  won the game.  At school the following week, I couldn’t remember my locker combination or my classes or where  they were even located.  I was sick to my stomach with vomiting.  My parents thought I had a concussion from the  football game. The doctors sent me to the hospital where tests revealed I had no concussion.

From then on,  things started getting worse.  I was driving to school one day, and called my mother and said, “I don’t know where  I’m at.” It was a very scary feeling.  I knew something was seriously wrong.  I started sleeping a lot, had numbness  and tingling in my hands and feet and was always cold. Had no appetite and started to lose a lot of weight.  I  couldn’t stand bright lights and loud noises.  My family felt as if they lived in a cave.  Started having mini seizures,  which doctors thought were anxiety attacks.  On Dec. 23, we had a big family gathering and people were taking  lots of pictures, which triggered a very bad seizure.  I was taken to hospital again where I was sedated and sent home the next day.

My parents finally took me to see our family doctor. He took one look at  me and knew something was very wrong.  He said all the other doctors were chasing a “red herring”.  He  sent me to have a couple of tests that came back negative.  He strongly advised me to go to the Mayo Clinic.  I was seen by a neurologist, who suspected my illness right away.  Had MANY tests and was finally given a spinal tap, which I had a bad reaction to.  The doctors filmed my eyes which were spinning like no other.  I was diagnosed with opsoclonus-myoclonus.  I couldn’t walk and had two grand mal seizures and almost died.  I was put on massive amounts of steroids.   I lost 80 lbs and had to learn to walk again. The disease has affected my eyes, balance, and coordination.  But I gradually got better. Now, my vision is good and I continue to get better.  Am still on a low dose of Keppra, and  some steroids. They have not been able to find my antibody.

It was late September 2009 and we had just finished celebrating our daughter’s 3rd birthday with a party at Chuck E Cheese when our lives took a turn that changed everything. Jayden had always been very healthy, never suffering from much more than the odd cold now and again. Suddenly, she began to walk “funny”. She’d pick up her left leg to take a step, kick it out to the side and then move it forward, not knowing where to put it to step forward. At first we thought she had injured herself somehow so I took her to the doctor. He couldn’t figure it out, since she wasn’t complaining of any pain. He sent her for x-rays & told us to take her to emergency if she got worse over the weekend. She had come home from daycare 1 ½ weeks earlier with a low-grade fever and a headache but woke up feeling fine the next day. We never connected this to the “funny” walk.

Nesrin’s daughter Sonia was diagnosed in 2008 when she was 12, and was likely the first diagnosed case in Canada. She went on to have four relapses and continues to battle the illness.

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