There are approximately 30,000 Americans living with cystic fibrosis, a fatal genetic disease that affects the lungs and digestive system. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and my son Karson and hope you will support me in my efforts.
Karson Vega was born on November 17, 2007 in McKinney, Texas. At the time of his birth Texas was not a new born screening state for cystic fibrosis and there was no known family history of CF on either side of the family. For the 1st 8 weeks of his life, never reaching over 8 lbs, he was a failure to thrive baby. After a multitude of tests, he was finally diagnosed with CF having two copies of the delta f508 mutation. Once he started enzymes he grew amazingly well and looked nothing like a baby with CF. He remained relatively healthy and out of the hospital until about 3 years ago when he came down with allergic bronchopulmonary aspergillosis (ABPA) and the treatment lead to a mycobacterium infection in his lungs. He was simultaneously diagnosed with cystic fibrosis related liver disease. While we can not resolve his liver disease and only pray that it slows down or stops progressing, we are very fortunate and blessed that after over 3 years of multiple IV, inhaled, and additional oral antibiotics, he has cleared and is considered irradicated of the mycobacterium infection. 2019 also brought him a birthday present of the approval of Trikafta, which he was so fortunate to start in December 2019. Since then his energy has greatly improved and has felt better than ever despite still struggling with sinus, GI and liver issues that will eventually require a liver transplant. At the end of 2021 Karson added another layer to his illness with the diagnosis of cystic fibrosis related diabetes and we are working diligently to learn the ins and outs of managing and incorporating this new hiccup into every day life. Despite his medical challenges, he remains resilient, courageous, outgoing, and full of goals and dreams for the future. He started tennis this past year and has proven to have a great love and talent for the game. He has done well in tournaments inside and out of school. He has recently discovered cross fit and is learning to challenge himself in new ways. His coaches and teachers praise his ability to keep going. He never gives up, even when he lags behind and struggles to simply breathe, he doesn't quit, he may not come in first, but he always pushes through and finishes. He also enjoys swimming, jumping on the trampoline, spending time with friends and family, hunting, fishing, and golf. He is happiest making other people laugh and smile and trying to brighten others day with his infectious personality and jubilant smile. His doctors and teachers are amazed at how positive he remains and praise his talents and attitude. They see and encourage his potential to be a positive impact on others with CF and all who face adversity. Everyone who meets him can see he is bound for greatness and will never be held back or down by any challenge he faces. He truly wants to be an advocate and inspiration not only for the CF community but for all people facing adversity. Even though some days are tough and filled with disappointments and set-backs, he knows there is also tomorrow and with it a hope for a brighter, healthier, happier future. He is a continual fighter with bravery and strength no child should have to exude. He will continue to be bigger and bolder than this disease and encourage others to do the same. Leading the way with his positivity and humor so others can see how bright and full of hope and life the future truly is. He knows that with his attitude and the help and support of all those in the CF community that CF will have no option but to stand for Cure Found.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease and no government support for care and research programs. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis and helping to fund these much needed care and research programs. Will you join me? Support me by making a donation to my Great Strides fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.