The story of Jessica
For years we went through dozens of doctors and hundreds of tests. My son was just a baby but we knew from day one something wasn’t right. We got general diagnosis but the medications and treatments weren’t helping! After several years with genetic testing we finally got answers! Well we kind of got answers….. a genetic link to primary ciliary dyskensia, or a probable link at least. The doctors didn’t have any experience with the disease or understanding how the genetic link really was affecting him despite all symptoms pointing to PCD. They told us about the link and that there just wasn’t enough research regarding the disease to pursue treatment. They said there was not one single doctor or treatment center in our state to help our son and told us to venture to North Carolina for further testing and treatment. They wanted us to travel all the way across the United States, with three young children one of which is constantly sick; we just didn’t have the resources. We still don’t have the resources and our son just barely gets by with mediocre treatment options and no specialist to direct his care. It has to get better then this, our children are our future and deserve the best care possible!