Some of my dearest friends have contributed their own experiences of what it's like to have a best friend with CF. These ladies truly mean the world to me.
“When I first found out that Alexis had Cystic Fibrosis, I was confused and unsure about what that meant for her and her future. I was young, and hearing that one of your best friends has an illness that there is no cure for, was a scary thing to comprehend. I had never met anyone with CF before, so I was completely oblivious to what Cystic Fibrosis was and the severity of the disease. Over the years I have come to understand a little more about the disease and I believe this has helped me learn more about who Alexis is as a person. Anyone who meets her can tell you that she is special, and within minutes of being in her presence you are guaranteed to be laughing. She is happy, positive, and strong; Unapologetically herself. At first glance, you would never know that she is sick by her attitude, and I think that is really inspiring. Her outlook on life is one that I admire and aspire to adopt for myself. While I believe it is human nature to be protective of the people you care about, I think being close with someone who has a disease makes you even more protective of that relationship and that person. I can think of many times being in a situation that would be considered "unhealthy" for a person with CF, such as being around someone smoking, and wanting to speak up on her behalf. Sometimes I have, and sometimes I have held back because if theres one thing I have learned about Alexis, it's that she is not afraid to speak up for herself or anyone for that matter. From this friendship I have gained the idea that everyone is given certain circumstances, and you can either choose to let it destroy you or uplift you. While I believe that living with CF has definitely shaped who Alexis is as a person, it has not defined her or prevented her from living her life to the fullest, even though at times it gets hard. Thankfully, advancements in medicine have made it so Alexis has a better chance at a longer life expectancy. However, time is still a very precious and wicked thing that my friendship with her has taught me not to take for granted.”
"I first met Alexis when we were 14. I was super bitter because I had just been moved from an English class that had been over-filled with my closest friends. I was the only one in our “group” that was forced into a strange new class. I knew no one, until I met the girl sitting next to me. She was new in town, dressed a little different than me, and she had the craziest, loudest laugh I had ever heard- but it was infectious. Little did I know, that laugh would become one of my favorite sounds in the whole world… and the girl behind it would grow to be my best friend, my first roommate, and through the years- my family.
From the get-go, I knew Alexis was hilarious, loving, kind, and completely filled to the brim with personality and life. There was never any sign of anything holding her back or making her any different than me. She was an active, social, strong young lady. It wasn’t until about 4 months of our quickly growing friendship that Alexis rocked my world with news that she had dealt with since she was a toddler.
One random night as we danced around her bedroom and gossiped about boys, Alexis suddenly started to cough. And it wasn’t just any cough- it was deep and aggressive. It scared me to the point that I asked if she needed some water, some help. This is when Alexis told me- she had Cystic Fibrosis.
“What the hell is Cystic Fibrosis?!” I had never heard of it. I almost didn’t believe her, I didn’t believe that someone so much like me could have such a severe, life altering illness. I remember going home the next day and talking to my mom about it. Even though she has worked in the medical community my whole life, my mom didn’t even know much about CF. But the more I fell in love with Alexis, the more I researched. I wanted to learn all that I could about what my best friend was dealing with. I wanted to know why the hell her life expectancy was so much shorter than mine.
It wasn’t fair. Call it selfish, but I would get so upset thinking about the possibility of losing her. I will never forget the day Alexis and I went to the funeral of another local boy with CF. He was our age. He had a lung transplant and everything- but his disease won the battle. This reality knocked me out cold, I started to think about how I was actually going to deal with the loss of my best friend. We were so young and so full of life- the thought was consuming. And the more I learned, the more I wanted the world to learn. I wanted everyone to know what she was going through and how awesome and resilient she was- but I was sworn to secrecy. At that point, she wasn’t quite comfortable telling just anyone about her battle. She kept it to herself and silently fought for a “normal” life.
There were times in high-school where we tried to be too “normal,” doing things we knew were idiotic and detrimental to her health (and mine, now that I reflect on it). There were also times where Alexis and I would fight like true sisters because I didn’t think she was taking care of herself. I would nag her like a mother asking, “have you done your vest lately, I think it’s been a while?” Living together got intense at times. I cared so much about how Alexis treated her body that I forgot to care about her emotional health and well-being. After a few months, we parted ways from our shitty little house on Carolina Beach Road. There were even times when we didn’t talk. I didn’t know how to be the friend Alexis needed back then. But as I said earlier, we quickly remembered that we aren’t just friends, we are family.
Now that almost a decade has gone by since we lived together (holy shit we’re getting old) I am so completely aware of the beautiful, strong friendship we have. In that decade I have witnessed miracles. I have witnessed the research, development, and introduction of Orkambi- a treatment with the potential to give her the quality and length of life she deserves. I have seen Alexis accomplish so much. She has taken chances, been brave, lived on the edge, pushed her boundaries, and discovered her true calling. She is here to inspire others that they are beautiful, capable, invincible, and important. I am constantly reminded of the independent, healthy, courageous, badass woman that Alexis truly is. There is nothing holding her back. Through all the things she deals with on a daily basis- she has still been a constant support for me and for all our friends.
Through it all she inspires me to be strong, be kind to myself, to enjoy every single minute, and to laugh as loud as possible!"