Having experienced the miracle of my lifetime with the drug that fights the underlying cause of cystic fibrosis, ‘Kalydeco,’ I have made it my life’s mission to bring that same miracle to the rest of those people who continue to face the worst of this awful disease.
In addition to being active in the community, raising funds and awareness, my goal is to bring hope to CF warriors, their families, and friends.
This is the first of many CFer profiles to come. I am optimistic that my posts about people thriving and creating their own miracles will bring assurance and comfort to those battling this horrible disease.
Let’s use positivity to kick CF’s ass.
Profile#1 CFer: Marieke Bevers, a 'Kalydeco Miracle' experience
A ‘Kalydeco Miracle’ herself, Marieke Bevers is a true model of the wonders of Kalydeco. Shortly after integrating Kalydeco into her daily regimen, she saw, and continues to see, consistent improvement in her health. She now has the energy to dance, jump, and sing; her weight has stabilized; she no longer needs 24/7 oxygen; and perhaps most thrilling, she is no longer being considered for a lung transplant.
Between the ages of 13 and 16, Marieke’s lung function rapidly decreased from 80% to 37%. During this period, she was hospitalized 17 times due to CF-related flare-ups (AKA: ‘exacerbations’ in the medical world.)
With the help and drive of her mother, Marieke was selected to be part of Vertex Pharmaceutical’s Compassionate Use Program, in which participants are permitted to partake in clinical trials with experimental drugs like Kalydeco even though it is not considered functional for their genotype. The results were unbelievable, and now, after taking Kalydeco for approximately three years, her lung function is floating around 75%! For those of you non-CFers reading this, 75% is quite good.
On to the fun stuff… Interested in getting to know Marieke Bevers? Take a look below at her responses to my CFer profile survey.
Birthday: January 7th, 1997
Diagnosed at 3-months-old.
Lives in: The Netherlands
CF Genotype: Deltaf508/S125IN
Favorite Things to Do in Spare Time: Singing, sailing, gaming, watching TV shows, and reading.
5 year Goal: Hopefully rounding up my law master’s degree, have my own apartment.
10 year Goal: Happy, thinking about starting a family, hopefully have a good job in the law area that I really love.
Most Significant CF-related Memory: When I got so sick that I couldn't do anything anymore. Then after that, when I got Kalydeco and managed to live my life again and make friends, and feel ‘normal.’
Favorite Quote: “There's no point in being sad or angry when you're sick; all that accomplishes, is you feeling sad as well as physically sick, and that doesn't make anybody happy.”
Fun Fact: I really love traveling. Even though I have been so sick, I have been on all continents except Oceania.
What are you up to now?
Right now, I am mostly focusing on school, finishing up my high school diploma this year, and then I am aiming to get into University to study Law next year. I am planning to travel more next summer, possibly going to Croatia, the U.S. with my boyfriend, and maybe go to Canada with my family.
Cystic fibrosis may be scary, but that is not to say that it defeats spirits. Many people with CF are living, thriving, and even grateful for the outlook that cystic fibrosis has given them and their loved ones.
Sometimes it takes hardship to really learn how to make the most of this life. And remember, we create our own miracles.
So what's your CF miracle?
If you or someone you know might like to be featured in a CF profile, contact me at kristyannwrites@gmail.com.
