I remember the very first time we met in sixth grade and I was struck by how comical you were. Everyone wanted to be friends with you; you were over the top, lovable and had no shame (which only enhanced your humor). Over the next nine years, I was fortunate enough to have you become my best friend and one of the most important people in my life.
You weren't very transparent about having cystic fibrosis, even though we knew you were often sick and wouldn't come to school. You only opened up to me about your struggle with the disease when we started high school. As a teenager, one can be blind to how serious CF is. As our other best friend Alyssa has said, “Our attention was usually focused on 'Spicy Chicken Wrap Wednesdays,' how many times a week we could wear our favorite sweatpants and boys.”
When college rolled around, we “just so happened” to choose the same school and major (I know you really just didn't want to leave me). Then of course we registered for every single class together … literally every class. We were inseparable. You would come to my dorm, call it “your dorm” and eat all my food. But I wouldn't have had it any other way.
Throughout our freshman year you became very ill. You were constantly hospitalized, and soon you were unable to make the commute from Long Island, NY, to Manhattan for class every day.
Most of our friends and peers never would have guessed you were suffering from CF. You were the class clown, the leader of our wolf pack and the greatest sidekick I could ever have. Every day spent with you was a blessing. You would make me laugh until I cried (way too often). Luckily enough, I have an archive of stories, videos and photos to make me belly laugh until we meet again. I am also grateful to still have your family in my life and I promise to be the best aunt I can be to your nephew, “Alexander the Great.”
When you passed in May 2011, I didn't really know how I was supposed to go on without you -- no one in your life did.
As time went on, I began to understand your passing and accepted that you spent your time on this earth exactly the way you wanted to -- by eating Swedish Fish and drinking gallons of apple juice. At the end of 2011, I felt compelled to help fight this relentless disease. That was when I reached out to the Greater New York Chapter to see how I could help. “Alexa's Minions” participated in their first Great Strides walk in 2012, and since then we have raised over $10,000 in your honor. I know that you must enjoy watching our crazy fundraisers.
It felt very rewarding to support this cause in your memory, so during my senior year I decided to intern at the Foundation's Manhattan office. Three months after graduation, a position opened at the chapter. It felt as if you were putting together the pieces of a puzzle for me. I was with Alyssa when I received the call from HR that I had gotten the position. It felt so special to have her there with me in that moment, since you physically couldn't be.
Alexa, I have learned more from you than I have from any professor, textbook or life experience, and I am forever grateful to you for that. I have also learned so much about cystic fibrosis after getting involved with the CF Foundation, and I am so incredibly happy to be helping in this fight.
When we have adults with CF come to our office to speak with us, I always see a little bit of you in them -- bold, kind and, most importantly, funny! As the saying goes, “laughter is the best medicine,” and you lived as long as you did because of your out-of-this-world sense of humor. Thank you for the giggles, Alexa. I am on this journey for you.