Hi my name is Shannon and on April 3rd I found out I was one in a million. After urgently leaving work and being taken to the emergency room for stroke like symptoms , several tests were performed and I was diagnosed with a rare brain disease called Moyamoya disease(MMD). MMD is a chronic and progressive condition of the arteries in the brain. It causes the main arteries in your brain to narrow and eventually block blood flow to the different areas in the brain. In my case, the two main arteries in the right side of my brain have already completely blocked . Luckily, my brain has tried to correct this disruption in blood flow by forming a large network of smaller arteries. However, these smaller arteries are weak and at risk of bleeding, which is why people with MMD are at a higher risk of ischemic stroke, hemorrhagic stroke and seizures.

Unbeknown to me , I have been progressively experiencing symptoms for several years. Most recently I knew there was something wrong shortly after my son, Sawyer was born. Soon after labor I realized I was feeling light headed and dizzy, something that was attributed to the stress of labor. Later, I was told to just drink more water. Then, I began to loose vision in my left eye and experience intermittent blurriness, double vision and migraines, among many other symptoms. I later found out I have been having mini strokes or transient ischemic attacks (TIAs) since 36 weeks pregnant , and have had four that I can recall since then . I feel fortunate to have been diagnosed by the interventional neurologist who reviewed my images. I have since learned that many other people wait much longer for an answer . Since that day in the ER, and subsequent night in the hospital I haven’t been able to accept the treatment plan of “just wait and see”. Wait and see how your disease progresses , wait and see until you have more TIAs, wait and see if you have a massive stroke …. I wanted to get back to living my life to its fullest, to learning how to be a new Mama and to engage with my son as he grows. I wanted a chance at a “normal” life . I am 30 years old after all, and was training to complete the NYC Marathon. That’s the type of Mom that I want my son to remember .

So, after some research I found Dr. Steinberg and the center for Moyamoya located at Stanford medical center in California. He has performed over 2200 revascularization surgeries , which will provide increased blood flow to the right side of my brain to bypass the collapsed arteries and prevent neurological deterioration from strokes. My husband and I will be traveling across the country in a few weeks for brain surgery. I will be in the hospital for less than a week and then stay in California for another weeks to complete follow up appointments. I feel lucky to have a second chance at life , to lessen the extent which I have been living in fear that something will happen , and to hopefully return to engaging in all of the fulfilling hobbies that I enjoy. Any of the generous donations received will be used to cover the cost of travel, lodging and medical expenses. My mantra has helped me on this journey so far, and reminds me to make each day count - “if you can be anything , you might as well be awesome!”