A chronic illness can enter your life suddenly, even though the signs may have been there for years. Our teenage son Max was diagnosed with Type 1 Narcolepsy (meaning with Cataplexy) this past summer and while some of the symptoms had been there for awhile, we were not aware of what they were. It wasn't until he began having Excessive Daytime Sleepiness during his freshman year in high school, that we realized he could have this condition. Max is actually lucky to have only had a few years from the beginning of his symptoms until his diagnosis. Many people are not properly diagnosed for 15 years! So as the mother of a child with Narcolepsy, I began thinking about how I could try to raise awareness of this condition. Because the typical onset of Narcolepsy is in the teenage years, I feel it's important to make parents and teachers aware of the symptoms so that someone struggling with these symptoms can get a proper diagnosis and treatment sooner rather than later.
I'm so lucky to have been selected by the Wake Up Narcolepsy Foundation to be on their 2020 Boston Marathon team! This is the platform I'm choosing to help raise awareness of Narcolepsy and I'm excited to help raise funds for research at the same time. I will spend the next 7 months training and fundraising and making people aware that Narcolepsy isn't just the funny scenes from a TV show of the person falling asleep in their spaghetti. It's not just feeling tired like when you miss a night of sleep. It's a life-altering, very complicated condition that can impact all aspects of life and it's so important that we continue to look for treatments and ultimately a cure.
There's one more piece of the story that makes this event so meaningful. I've run ONE other marathon in my life. In 1996, when my dad was turning 50, we both entered a lottery being held that year for the Boston Marathon's 100th Anniversary. He wanted to run a marathon to commemorate this milestone birthday and we both were selected in the lottery and ran it together that year. He also raised $6,000 for Multiple Sclerosis. Ironically, the 2020 Boston Marathon just happens to fall ONE DAY before my 50th birthday on April 20th, 2020. So I will be able to ring in the big 5-0 just like my father did while helping a cause that is very important to me. This opportunity was meant to be!
Thank you for reading and please consider donating to my campaign. Follow me on social media on Instagram at @gretchmick and Facebook (Gretchen Zahnow Micklitsch) and follow my journey. You can also learn more about Narcolepsy and the causes, symptoms and treatments by following @wakeupnarcolepsy. Thank you!