Our Xtreme Hike Story
Thank you for visiting our team page! The Heavy Breathers are back!
Cystic fibrosis is a rare, life-shortening, genetic disease....blah, blah, blah. By now, you've heard the spiel and you know it can be summed up as this "CF sucks".
In case you weren't aware, there's still a global pandemic going on and it's still scary, especially for people with CF. Despite the pandemic, we continue to be exceptionally fortunate as we navigate life with CF. Vivi attended kindergarten IN-PERSON for the entire year last year and is growing into a fun, little person! While I congratulate the school on a job well done, I take pride in Viv's terrific awareness of germs -- afterall, germs have been our nemesis for her entire life. We strive to provide a life of normalcy while upholding a healthy respect for risk. As we always have for Viv, we'll continue to be vigilant and raise awareness. Now it's time to raise money!
Last year, we had an "AMAZING NEWS UPDATE" related to a breakthrough therapy for CF called Trikafta.** The study for younger children 6-11yrs old has been hugely successful. This drug gives us so much hope that Viv will lead a healthier future and not face lung transplantation in her life. WOW! Vivi turned 6 on Aug 5th -- and shortly thereafter she started Trikafta! Best birthday present ever!
BUT, this isn't a cure. There are many other complications related to CF aside from lung function. Viv will likely always take enzymes EVERY TIME she eats something that isn't fruit. She carries a high risk of becoming insulin dependent as the disease progresses and mimics diabetes. It's not time to get complacent. All the progress that has happened has been from fundraising for the CFF and their dedication to pushing research forward.
Please make a difference and support us by giving to our Xtreme Hike fundraising campaign today. Donate an amount that is meaningful to you.
Much Gratitude & Love,
Gina, Bryan, Vivi and Team Heavy Breathers
**In Oct 2019, a breakthrough therapy for CF, Trikafta, was approved by the FDA. For people with one copy of the gene mutation F508del (that would be Vivi), research showed a more than 14% increase in lung function. Currently, a study in children with CF ages 6-11 years old is underway.