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Margaret's 2nd Annual ASAP SY-RINGO-MY-WHAT?! Steps Across the States


Raising funds for research, education and awareness. Providing support and programs for the CM/SM community since 1988.

Hello! My name is Margaret Leisenheimer, and I am currently finishing up my senior year at LaGuardia Arts High School. I was diagnosed with the brain and spinal cord disorders known as Chiari malformation (CM), syringomyelia (SM), and scoliosis when I was fifteen. I was seeking diagnosis for only a few months because my scoliosis was so severe. After seeing many doctors and, finally, my surgeon, I was told that I needed surgery to correct it. As part of my pre-op testing I needed a full body MRI, which revealed that I had a syrinx (syringomyelia) and Chiari malformation. My surgeon informed me that I needed to have that fixed before he could operate on my spine, which was progressively growing worse.

I had brain decompression surgery in the middle of my sophomore year of high school. This meant opening a hole in the back of my skull and making more room for the back of my brain. This corrects the CM, and also corrected the SM. My Spinal fusion was that July. This was a difficult time for my family and me. I couldn’t walk on my own. I couldn’t feed myself and I had to rely on my family for everything. I couldn't spend much time with my friends, if at all, but they would come visit me during my recovery. If it weren’t for all of them and my doctors I don’t know what I would have done. They were all amazingly supportive throughout the entire process.

It was quite a year, but I am not one to quit. I returned to school to finish up the year with a 95 overall average. All of my teachers really understood and helped me get back in the swing of things. I'm able to participate in as many things as my mom lets me, except hula-hooping. So I guess I can't be a professional hula-hooper, but that's okay. My experience actually strengthened my relationship between myself, my family and friends, and helped all of us become closer to each other. I'm happy to say that now I'm able to spend time with them like any other teenager would.

Fortunately, I made a full recovery but I also knew that I was lucky. There are over 300,000 Americans who aren’t so lucky. Most live with chronic pain, paralysis, tingling and numbness, debilitating headaches, loss of function and much more. Many still struggle with SM, CM and its associated illnesses, so I joined ASAP because I wanted to help those that were still fighting. Last April I hosted my first "Syringo-My-What" walk and raised over $5,000!

I attended my first ASAP conference in July, 2014. There I met other people affected with syringomyelia and Chiari from all over the United States. I was also able to learn about these disorders from the top doctors in this field during three days of lectures. While there, I was honored with a “Helping Hands Award” for my work in fundraising. If I have one piece of advice for people who are afflicted with syringomyelia and/or Chiari malformation it would be to stay strong and take advantage of the good days. These disorders may be a large part of you, but they don’t define you. You are the strong, determined person that is making it through everyday step-by-step, and I admire you for it. This will be my second time hosting "Syringo-My-What," and I am very excited to meet all of you.