Saturday, May 14, 2011
When I was just beginning my chemistry studies in 1996, scientists were stumbling upon the first Vertex compounds VX-770 and VX-809 in a lab. A series of events and investments followed those discoveries to bring us to where we stand today...at the door of the FDA with a groundbreaking new treatment not only for CF, but for all genetic diseases. The fact that Brady is part of the tiny population(1200-1500 people is what I have heard) that will be able to benefit from this drug right away, is something that I give thanks for every day. It is not lost upon me for a single second that when VX-770 arrives to help Brady, thousands of others with CF will still be suffering. Bittersweet. I would be lying if I claimed that I wasn't so involved in supporting the CFF for completely personal reasons. I NEED my baby to be alive. At the same time, I feel a connection to this community that is more powerful and compelling than anything I've ever experienced. I love several of the people, especially other moms, that I have met through facebook etc... that make me feel like I am not alone. For those of us that live with CF every day, I don't need to explain to you how much the support from friends, family, and community at Great Strides time means. People frequently tell me that I seem "dedicated" to supporting the CFF. My response is always, "there is a fine line between dedication and desperation."
I am really just a mother, who is not about to stand idly by while their child is destroyed. I remember the day I learned that Brady had CF as the worst day of my life...but it is also the day that things came into focus. Absolutely nothing has changed my personality or outlook on life the way dealing with CF has. Before CF I based my life on "plans." The life I have today is certainly not the one I had planned, but I feel more focused and determined than I ever have before. At this point, I see life as the wildest ride I could ever imagine and I am just trying to hold on. When I decided that fundraising for the CFF would become my mission, I basically committed to sharing the journey with everyone in my path. People don't want to donate to a disease that they know nothing about. Be warned that sharing your CF story can be a painful road that will leave you vulnerable, wounded, and frequently sobbing in your car. You have to place your battered heart out there constantly and hope that the reaction you get doesn't just finish you off. I can't begin to explain how important it is to me that people stand up and get behind me when I do an event like the "2nd Annual On Par for a Cure Golf Scramble," or the Great Strides Walk. The money contributed to the CFF is going directly to the research that is controlling CF. That research could be drastically changing our lives within the next year. How much closer to the action can I get? I must remain focused. For me, fundraising is one of the only things that feels really good, like I'm doing something to help. I would be lying if I said that I don't take it personally if my friends and family support the CFF. If you aren't interested in helping me keep my child alive, well, I'm not sure we have much to talk about. Is that fair? No. That is sort of like saddling the rest of the people that love me and Brady with CF too. But is it fair to try to pretend like I don't mind if people who claim to be my friends are suddenly too busy and broke at Great Strides time to contribute? Hell no. The people that attend Great Strides are more important to me than those who attended my wedding. I don't know how else to put it.
I feel an enormous responsibility to repay the work that the CF Foundation has already done and make sure that everyone suffering from CF gets to benefit from a genetic modifier like VX-770. It is emotionally draining to be so angry at CF and so ecstatic about VX-770 at the same time. I know a local man who underwent a double lung transplant a week ago because of his CF. He very nearly died. The clock never stops ticking when CF is in your life. Every day I tell myself that once Brady has his new medicine, I will have so much more time and energy to devote to fundraising. It is a surreal feeling to know his medicine is coming so soon. I feel "guilty" being one of the first CF moms to be staring this breakthrough in the face. Why are we so lucky? We haven't paid our dues the way so many other families have. God, I will try to pay it back. I will never stop fighting. As much as I hate it, I will keep approaching everyone I know (and don't know) to ask for help to cure CF. I absolutely despise asking for money and sometimes I swear I would curl up and die if the person I beared my soul to decided to reject me.
So thank you friends. Thank you family. Thank you dozens of businesses that donated to my golf tournament. Thank you stranger who decides to volunteer. Because of you, I won't go completely crazy today. Because of you I will put my old beat up heart out there again tomorrow. and thank you also to the mean lady that yelled at me for asking for her help. Because of you, my skin is thicker and I will try to never allow "no" to get me down. What an extraordinarily lucky life I live. Who knew that giving your heart an absolute beating could be so rewarding at the same time?