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A sister’s story on advocacy
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Topic: Becoming a CF Advocate
This is @cf_sis_4_a_cure experience:Growing up, the greatest challenge I face is watching my brother’s health deteriorate as CF overcomes his body. I have watched Matthew @my.fearless.life be hospitalized over 30 times in the past 10 years. Each stay lasting at least two weeks long and usually no longer than 3 months apart. I’ve watched him struggle every day just trying to catch his breath from doing simple tasks that most people don’t even think about, we do them effortlessly. I have watched him take handfuls of pills at a time, withstand countless treatments, blood draws, PICC lines, and bronchoscopy procedures just to maintain his current health as long as possible before it once again inevitably declines. Because of this, a couple of years ago I decided I was tired of watching. I faced the fact that I can’t change or improve my brother’s health no matter how desperately I longed to and turned to something I could control to fill that void.
Advocacy has been an outlet for me ever since this revelation. I created a social media account to spread awareness and update friends and family on his current condition, I help run our local Great Strides Walk for CF annually, and I attended Teen Advocacy Day on Capitol Hill in 2016 and 2018 as a Washington representative. As I continue to be an advocate for my brother and others with this horrible disease, I have learned the significance of participating in something that is bigger than yourself as well as the importance of never taking life for granted. If someone in a similar situation to me came asking for advice, I would tell them not to focus on what they couldn’t control, because the obsession would take over their life and lead them in a dark direction. Instead, find a passion and throw yourself into it. Make it a priority, never lose sight of the importance in focusing on the positive, and truly live the life you were given because no matter how short, it is a blessing. Sincerely, A CF Sibling
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