Every year, I participate in the Cystic Fibrosis Foundation Great Strides Walk to raise money for a cure for Cystic Fibrosis. This year we will be walking at Suwanee Town Center on May 20,2023. My fundraising goal is $10,000. If you are wanting to join us for the walk this year please click "Join this Team" and if you are able please consider donating to fund research for a cure for this disease that I and thousands of others in America live with.
Cystic Fibrosis is a rare genetic disease that is found in about 30,000 people in the U.S. I was diagnosed with Cystic Fibrosis at 18 months old and have been living with this disease my whole life.
CF has affected my life in so many ways. I know I would not be able to handle this disease if it wasn’t for my relationship with God, my family, my wonderful friends, and my incredible CF medical team’s constant support.
My first hospitalization due to CF complications was when I was 7 years old. I remember how scary it was to have to stay at the hospital for two weeks to get IV antibiotic treatment through a picc line. I was terrified and cried a ton. We always tried to make the hospital fun and cheerful because we knew we’d be there for a while. We would even bring my own bedding for the hospital bed and pictures to put around my hospital room. So many people were there to support me and my family during my first hospital stay and that support has continued to this day. People stay the night with me at the hospital to give my parents a much needed break, bring meals to my family, pray for me and with me, play games with me, and so much more.
My medical team has been so incredible these past 26 years. They have encouraged me when I'm scared and cheer me on constantly. I feel so taken care of by my wonderful healthcare team. They never stop fighting to find new ways to treat this disease and prayerfully one day they will find a cure. I am so grateful for the medical team I have!
Medicine has come SUCH a long way since I was born. When I was born, the life expectancy for someone with CF was around 27 years and now it is around 48. I don't let that scare me - I live my life to the full! I do whatever I need to do to keep myself healthy because I know that anything is possible.
I do breathing treatments twice a day which can take up to two hours each time so that is about 4 hours out of my day. I also need to exercise to be able to maintain and increase my lung functions. I take about 14 pills a day which include vitamins and pancreatic enzymes which help me digest food.
When I was in middle school, I got diagnosed with Cystic Fibrosis Related Diabetes and had to start taking insulin injections. However, since high school, I have thankfully been able to maintain my blood sugar and no longer need to take insulin.
For two years starting in 2016, I experienced a difficult time. I was very underweight and my lung functions were around 70 to 75%. I also coughed up blood numerous times and had to be admitted to the hospital three times in a year - it was so scary! I am so grateful my doctor and his team were able to figure out what was going on. I had grown a mycobacterium in my lungs which was aggravating my lungs. I had to get intense treatment for it for about 18 months. Thankfully, the mycobacterium has gone away and has not come back.
In February 2020, I coughed up blood again and my lung functions were in the 75% range. I was admitted into the hospital and had to have an embolization procedure on my left lung to stop the bleeding.
Soon after in March 2020, however, I started taking this new medicine called Trikafta which has been a miracle drug for me. I went to clinic again for the first time in almost a year in January 2021 and my lung functions were 91%! This new drug, plus being diligent with my breathing treatments, pills, and exercise, has caused my lung functions to increase dramatically, and today I feel amazing!
This new drug was possible because of all the funds that have been raised for Cystic Fibrosis research over the years. I am so grateful to every single person who has donated in the past because this new medicine and new therapies have changed my life.
This past year 2022-2023 my lung functions got up to 93%!
I say all this because I want to tell people my story and help bring awareness for Cystic Fibrosis. CF is such a challenging disease. It is sometimes painful and scary. Trikafta has been a huge breakthrough for me and others with CF to increase our quality of life. However, we are still waiting for a cure. Please consider donating to my page to help raise funds for a cure for CF.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.