Friends & Family-
With the current COVID-19 crisis and global uncertainty, I have been struggling. Struggling with self-isolation, anxiety about how to stay healthy being apart of the high-risk population, and a general uncertainly of what ‘returning to normal’ will look like. I have felt unsure how to fundraise when so many people have been impacted physically, mentally, and financially. However, cystic fibrosis (CF) hasn’t stopped and neither has my desire to find a cure. Keep reading to learn more about my journey with CF, and if you’re able, please consider making a donation by clicking the 'Donate To Lydia' button.
CF is a genetic, life-threatening disease that affects the lungs and digestive systems, causing persistent lung infections and progressively limiting the ability to breathe due to the buildup of thick mucus (think mucus the consistency of peanut butter). The thick mucus also means I do not have the ability to digest any fat or protein on my own. As a result, every day I spend an hour doing treatments to shake the mucus from my lungs, and take almost 25 pills throughout the day. I do this every day just to combat my symptoms. There is no cure for cystic fibrosis and the average life expectancy is just over 40 years old.
This last year was full of ups and downs for me:
- Last August I held my first-ever sand volleyball fundraiser, Bump, Set, Breathe. With the additional funds I raised, Team Lydia raised just over $39,000!
- In September 2019 I was hospitalized for IV antibiotics after a nasty cold sparked an exacerbation. I had the opportunity to write a blog for the CF Foundation on how learning to ask for help is a continual learning process.
- The CF community was able to celebrate some amazing news with the FDA approval of the new CFTR modulator, Trikafta. In November, I had the opportunity to try it. Unfortunately, I didn’t tolerate it well so have since stopped taking it after consulting with my care team.
Fortunately, the future of CF research is bright. Truly, we are closer to a cure now more than ever. With CF being a rare disease, every dollar in individual donations truly counts.
There are many organizations and causes that need support, especially at this time, and I hope you will consider donating if you are able. Simply click the ‘Donate to Lydia’ button to contribute. I can’t say it enough: every dollar truly helps and is immensely appreciated.
CF will one day stand for cure found and I won't stop until it's done.