Megan Jenkins

My Great Strides Story

Kicking CF for KJ 

KJ was diagnosed with Cystic Fibrosis (CF) as an infant. We have been diligent with his treatment plan, as well as have been diligent at preventing exposure to germs. He continues to not go to daycare to help prevent infection. KJ's nana Linda and papa Ken have dropped everything they were doing in California to help be his caretaker while Kenny and I work. KJ communicates to his mom and dad to shower when they get home from work, “shower mommy, shower daddy” as he knows it is routine to wash off all the hospital germs when we get home. We had one scare of KJ growing the bad bacteria Pseudomonas on his routine CF culture this summer. He completed a month of oral and nebulized antibiotics and was able to avoid a hospital admission. He now is 2, so was just started on the “miracle drug,” Trikafta. We pray he tolerates the medication and it works for him. He is thriving and we pray he continues to do so! CF is a progressive and life-threatening disease, but science has provided hope.

Cystic Fibrosis (CF) is a genetic disorder that affects the respiratory, digestive, and reproductive systems. It is caused by a mutated gene that regulates the transport of salt and water in and out of cells, leading to the formation of thick and sticky mucus in the lungs and other organs. This mucus can block airways, making it difficult to breathe, and can also harbor bacteria, leading to recurrent lung infections. CF can also affect the digestive system by clogging the ducts that carry digestive juices from the pancreas to the small intestine, leading to malnutrition. CF is a life-threatening disease that has no cure, but with advances in medical care and treatments, the life expectancy of individuals with CF has increased.

This year, KJ's family will be participating in the CF Great Strides Walk in Minnesota, and they would like others to join them in the fundraiser walk. 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. Also many can not afford. The medicine is very costly. Without insurance Trikafta is around $360,000 for a year supply of this medicine.  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 KJ! By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease and hopefully give KJ and others like KJ many more years with further advancements in medicine. Please consider joining us by walking or donating or both and help make medical history.

Thank you for your support in this mission.