Dear Friends and Family,
Tracy's son was born in the summer of 1999. That year, we learned we learned our least favorite words, Cystic Fibrosis. Brendan was diagnosed with this genetic disease not long after he joined our family. At that time, the life expectancy of someone with CF was early 30’s. Needless to say, we were devastated. We began our own research to learn everything we could about CF including the medical information but connecting with other families being affected by this disease. We explored the opportunities available to help with research to fight against CF and eventually find a cure. In our search, we learned about the Cystic Fibrosis Foundation. We knew, right way, that we wanted to be a part of this organization. We were, and still are, 100% committed to being a part of this great organization, not only for our family but all families who have a loved one who has been affected by CF. When we first became part of the Cystic Fibrosis Foundation and created our Great Strides Team, we named it – Brendan Bears. As the years went by and Brendan added candles to his birthday cakes, the CF Foundation was adding years to the life expectancy of CF patients. Each year, we added more walkers (and most importantly dollars) to the Brendan Bears Great Strides Team.
In 2009, our family was complete, when Bella was born. She, too, has Cystic Fibrosis. We were no longer just walking for just Brendan. Now we walked for both Brendan and Bella. That year, our Great Strides Team became Brendan and Bella Bears. During the 10 years between when Brendan was born until the time Bella entered the world, the life expectancy had climbed to the late 30’s. We could see that our commitment and dedication, combined with thousands of others, was helping to raise the funds needed to continue CF research. We made a vow that we would continue our commitment to the Cystic Fibrosis Foundation and each year, continue to raise money so the research can continue to make advancements.
Brendan has been taking Trikafta for over 3 years. Trikafta has helped improve Brendan’s overall pulmonary functions and other CF related medical issues. Even though Trikafta has had some positive results, it does have some side effects. We believe that with continued research, improvements will be made to Trikafta, and those side effects will lessen. Brendan is wrapping up his studies at the University of New Orleans. He is anxious to graduate soon and can’t wait until he can begin his career. Since he was little, Brendan has always had a fascination with planes. His fascination was with all aspects of planes, from building Lego models to doing flight simulations and now actually flying ones. Trikafta has made such health improvements, that Brendan has been able to fulfil his dream by taking flying lessons. He has completed all the classroom studies and finished his lessons with an instructor accompanying him during his flights. The last step is for him to do a solo flight. We can’t wait until that day comes and we can watch him from the ground as he flies overhead. Words cannot express how proud we are of all his accomplishments. When we first learned about CF, 24 years ago, the medical side of things didn’t look like Brendan would be able to experience all that he has. This is only the beginning! We know that by the time we write our next update, Brendan will have so many more things that he was able to accomplish, and we can’t wait to share them!
Bella is graduating from middle school this year. She is so excited to start high school in the fall at St. Mary’s Dominican High School and begin this new chapter of her life. In many ways, she is a typical 14-year-old who is into fashion, trying new make-up trends and hanging out with friends. However, she also loves to sing and play sports. She has been on the Volleyball team, the soccer team and the Softball team. Her favorite sport currently is Gymnastics. Trikafta has been a great thing for Bella’s CF related medical issues. Unfortunately, when Trikafta was released, Bella was not old enough to meet the requirements to start receiving this medication. We counted down the days until her 12th birthday so she could start the same treatments as her big brother. Even though Bella and Brendan have the CF mutation, CF affects them very differently. We had dealt with constant lung infections and new bacteria when Brendan was young, but Bella’s CF effects are quite different. Some of Bella’s biggest CF ailments have been with her digestion. Trikafta has helped with those digestion issues and Bella has been able to maintain a healthy weight. We know that as time goes on, things will only get better as research continues to improve Trikafta and other CF medications. We are anxious for her to start her high school experience. We know this will be an important time for her to grow, not only as a young person but to also start figuring out what she wants for her future.
This year marks our 23rd Great Strides Walk! The Cystic Fibrosis Foundation will not stop until life-saving drug therapies are found for ALL CF patients. We invite you to be part of our success by donating to our team or coming out to walk with us on Saturday, May 13th, at Lafreniere Park. Registration for the walk is at 9am with the walk starting at 10am.
Jonathan B. Haslauer, Tracy Haslauer Novak and Beverly B. Haslauer