My Great Strides Story
Jackson is like any other 6 year old child. He enjoys being outside, playing with his friends, and going to sports practice. He is constantly running around and needs to be on the go. This past year, he has learned how to ride a bike with no training wheels, gotten over his fear of rollercoasters (slightly!), and is learning to read. He loves to travel to different places - especially Disney and Legoland.
All of these typical normal activities are overshadowed by cystic fibrosis more than we'd like to acknowledge. Each trip comes with extra preparation in preparing his vest and machine for chest PT, nebulizers and equipment, medications, and feeding tube supplies. This requires us to have to drive to our destinations in order to make sure that all of his medications are safe and make it to our destination. We also need to pack more than others, which would make flying almost impossible. Besides packing, we need to make sure that we have ample time set aside in the morning and at night to do his treatments. This may mean that Jackson has to wake up earlier than we would like him to just to make sure that we are able to keep him healthy.
The past 3 or so years we have known that a drug called Trikafta was more and more in our reach. This drug is like a cure for cystic fibrosis without actually being a cure. We are extremely hopeful that this drug will help Jackson's body act as though it does not have cystic fibrosis. Now that he is 6, we are days away from him starting this medication. While it may have complications, we can only hope that it has more benefits to Jackson. This could mean less hospital visits, less medications to take, and healthier lungs with accelerated growth.
You can support me!
By supporting my fundraising goal, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.