Stephanie Stroh

My Great Strides Story

Great strides has always been big in our family. We have been fundraising for as long as I can remember. Rather it be having fundraiser nights at the rink where my entire family donated their time, spreading awareness to everyone we came in  contact with, or attending the walks. 

Cf came into our lives in 1987 when my sister, Bridget was born. Then again 13 months later when I came along. We grew up on a “healthy” cfer side for the most part. We had An amazing support system; my parents and two older brothers always made sure we did our medications and treatments, never missing a dose, new medications made us able to live a “normal” life! We were able to go to collage, have friends, have full time jobs; But cf is not fair and while you can do everything right it still seems to progress with age. Bridget seemed to have more infections as we were reaching high school, requiring more antibiotic uses and hospitalizations. With a hard fight, She passed away just 9 days after her 21st birthday, 2008. After this I became more involved in studies and research. I was no longer just living for me but for my sister too. 
I married the love of my life, joined roller derby, found a career I loved. For 10+ years I participated in studies and trials. My health stayed stable and “great”. 
In 2018 I started a trial for what is now called trikafta. While we didnt know if I was on the drug or placebo at the time, I felt awesome. My husband and I found out we were pregnant with our miracle baby a few months later. After stopping the drug and going to all doctor appointments needed, everyone was confident with my stability and overall health everything should work out, no foreseeable issues. Sometimes you get the unexpected. While I had some of my best lung functions midway through pregnancy, when the last trimester came I was struggling. The day after my baby shower was the start of my 3 month admission. We had an emergency c section at 34 weeks hoping my lungs would bouce back. 
I was blessed with a beautiful baby girl, Delaney. Who in this life is my greatest accomplishment. She had a few weeks stay in the nicu for being a premie but is a healthy little girl. 
Recovering from the c section was rough, and long story short my lungs were not happy. I ended up on a bypap breathing machine for 48 hours. Even with lots of motivation and hard work I wasn’t able to get my lungs working again. I was listed and received a double lung transplant 5 days later. 
Today rocks! I feel great and am able to chase around a 3 year old! I was given a second chance at life and I hope to do what I can to help others. 
Great strides is continuing to gather research and create new medication and treatments! I hope I can be a part of the cure! I want others with cystic fibrosis to be able to have an amazing life too! 

Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I walk for them.

Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.

You can support our team to help CF stand for cure found! I’m 

By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.