Shannon Gulla

Sarah Grace turned 13 on her last birthday! Our team has been fundraising and celebrating at Great Strides for just over 13 years now. Thirteen is a big number and has been Sarah Grace’s “lucky” number for many years - long before she ever sang lyrics from a Taylor Swift song. She requests this jersey number whenever possible for every sport! Thirteen also means our CF warrior is a teenager and she is taking on more responsibility for her own healthcare.

Sarah Grace managed her own therapy and medications while on a two different school trips this year. She hopes to do this again on the church mission trip this summer! At CF clinic visits, Sarah Grace has been routinely filling out the questionnaires about her treatments and her symptoms. Her doctors generally talk to her now rather than Mom and Dad. We are just along for the ride!

However, her next clinic visit will be more discussion with Mom and Dad and then explaining thought processes and plans to Sarah Grace. She had abnormal lab values at her pulmonology visit in November and we have finally been able to have testing needed to determine what this may mean. She has at least had exposure to a bug that doesn’t harm most people. However, as with many other things, it can be a big problem for CF kids. As we write this, we are waiting to hear from her doctor to determine if she has just been exposed or has some of the complications associated with this bug. Treatments could be unpleasant and may push her from being pre-diabetic due to CF into full on CF-related diabetes, among other things. Not great news. However, we remain hopeful and wait as patiently as possible for guidance and direction.

Overall her health has been great, especially since starting Trikafta. While we handle this latest hurdle, we remain incredibly grateful for all of the treatment and drug advances that have helped keep Sarah Grace healthy! We wouldn’t have these advances to preserve Sarah Grace’s lung health without the dedicated researchers and generous donors who fund their pivotal work! None of this would be possible without people like you - our friends and family who bless our lives with your love and support! Your donations are changing lives!

Real progress has been made in the search for a cure, but the lives of people with CF are still challenging and limited, and sometimes cut too short. While we have treatment plans to help CF patients live longer, healthier lives, there is still no cure for this devastating disease. Research continues to try to find better drugs with fewer side effects and hopefully one day a true cure! 

By walking at Great Strides, I am helping add tomorrows to the lives of people living with cystic fibrosis. Your support means the world and if you are able, I would be honored if you would make a donation on behalf of my daughter for this year’s Great Strides fundraising campaign for CF. Thank you for supporting me, Sarah Grace, the mission of the CF Foundation, and Great Strides!