Because "not doing something" is not an option.

If you’re reading this, you probably know that when I was 3 months old, I was diagnosed with cystic fibrosis (and if not… well, now you do!). CF a life-threatening, genetic disease that primarily affects the lungs and digestive system of over 35,000 children and adults in America. CF is caused by a defective protein inside the cell, which prohibits salt from entering and exiting at a normal rate. This salt imbalance causes the body to produce abnormally thick, sticky mucus that clogs the airways of the lung and leads to life-threatening infections and irreversible lung damage. In addition, the thick mucus obstructs the pancreas from distributing digestive enzymes that allow the body to properly absorb food. Without these enzymes, most individuals with CF are incapable of digesting necessary nutrients from their meals. Cystic fibrosis can also cause a number of secondary conditions such as diabetes, liver disease, infertility, osteoporosis and more.

There is no cure for cystic fibrosis. When I was born, the life expectancy was just 20 years old. While it has since been raised to around 40, it is still a debilitating disease that significantly reduces quality of life and ultimately, is fatal for all patients. For the last 25 years, I have fought a daily battle against cystic fibrosis. I take over 20 medications a day and spend hours doing inhaled treatments and respiratory therapy to try and maintain my lung function. This spring, I began the process of getting evaluated for a double lung transplant, a last resort option for when my lungs are no longer capable of providing me the oxygen I need to survive.

During one of my transplant appointments in May, a psychologist asked me "What do you look forward to being able to do for the first time or do again?"

It took me a minute to answer because I realized, doing something for the first time or doing something again means that at some point, I was not doing something, and not doing something has never been a part of my reality. Despite the many medications and hospital admissions, not graduating college was never a possibility. Despite my fears or doubts, not going to work and not holding a full time job was not an option. Not going on vacations to spend time with family and friends, not volunteering in the community, not living each day to the fullest are all just inconceivable notions to me. My mindset has always been that if I want to do something, I do it.

I have never seen my cystic fibrosis as something that held me back or somehow kept me from living a great life. I don’t believe that my cystic fibrosis could or should stop me from experiencing anything and everything my heart desires. Sure, sometimes, I have to adjust how I do something so that it doesn’t jeopardize my health. I make choices to compromise between what I want and what my body need, but I still (stubbornly) push forward with my dreams and aspirations, uninhibited by the chaos that was happening inside me on a daily basis. Yes, I have cystic fibrosis and yes I am "sick," but I am a person first and foremost. And I’m always going to choose to do something over not doing something.

I've been extremely fortunate in that I have an incredible support system that encourages me in whatever it is that I want to do. Last year, my do-something mentality coupled with this steadfast support system allowed me to do something I never thought possible... hike more than 17 miles in one day despite having just 35% lung function.

25,000-ish steps. 4,800-ish feet above sea level. 35%-ish lung function.

And this year, I’m doing it all over again.

For the second year, I have committed to an Xtreme feat and I’m looking for your support. On September 23, I will be participating in the 5th Annual Xtreme Hike to raise awareness and funds for the the Virginia Chapter of the Cystic Fibrosis Foundation. Hiking along with me will be my mom, two younger brothers, brother’s girlfriend and dozens of friends. This event is designed to empower individuals to push their limits both physically and philanthropically. I will be doing the Half-X and aiming to finish more than 15 miles in just one day, while my brothers shoot for 30 miles!

Since my hike last year, my lung function has continued to decline and today, sits at just 30%. I cough more and I take even more medications that I did a year ago. I’ve spent more nights in the hospital and more weeks hooked up to IV antibiotics. Since hiking those 17 miles, I’ve started the process for getting a double lung transplant and while I don’t know exactly when that will happen, I’ve reach a point it’s no longer a matter of “if” but “when.”

But since last year, I’ve also witnessed more developments come from the work of the Cystic Fibrosis Foundation and the fundraising efforts of thousands. In the last 5 years, breakthrough medications that treat the underlying cause of cystic fibrosis have been a focus of research and drug development. To date, two medications, Kalydeco and Orkambi, are available and treat around 50% of the CF population. Since my hike last year, the use of these medications have been expanded to additional patients, including the use of children under the age of 12. Even more exciting though, is the July 2017 drug trials results for the next phase of medications, which showed a significant increase in effectiveness and will allow for over 90% of patients to partake in therapy! In 2015, I started Orkambi and my health stabilized, but I did not have any increase in lung function. Initial results from this next round of medication are showing that patients could have a net increase of more than 10% lung function!

This September, I’m hiking for so many reasons. I’m hiking for the 50% of patients who can already take Kalydeco or Orkambi, the 40% who will be getting a medication soon, and the 10% that still remain. I’m hiking to say thank you to the hundreds of loved ones that have supported me in the last 25 years. I’m hiking for everyone that has ever felt the heartbreak of losing their family or friend to cystic fibrosis. I’m hiking so that when I see that psychologist again, I can tell her that it may not be for the first time, but I eagerly look forward to participating in my 3rd/4th/5th/etc Xtreme hikes with my new lungs.

I’m hiking for a cure, because not finding a cure, is not an option.

Please consider making a donation today to show your support for me, my hike team and for the 35,000 others who are living with cystic fibrosis.

Making a donation is easy and secure. All donations are 100% tax-deductible and can be done on my online fundraising page (http://fightcf.cff.org/goto/jilliangoodwin-hike) by clicking the DONATE TO ME button at the top of the page.

And finally, please share my story. Send an email to your friends, share my personal page on Facebook, tell your mailman. Whatever floats your boat! Even if you aren’t able to make a donation, please share because you never know who of your family and friends may be able to help.

I haven’t gotten where I am today without the love and support of hundreds and I could not say thank you enough. Thank you for your donations thus far and thank you for always cheering for me as I continue to “do something.” Thank you for loving me through the bad days with these disease and thank you for celebrating with me on the good days. Thank you for extending your unwavering compassion and understanding, I truly would not be writing this today without such encouragement.

With love and gratitude,
Jillian