Pamela Callahan

This year’s Cystic Fibrosis (CF) letter sucks to write. In March, Aaron was diagnosed with Cystic Fibrosis Related Diabetes (CFRD). For Aaron his pancreas has become the latest target and the CF mucus now blocks his ability to create insulin, release enzymes, and absorb any nutrients. I’m not going to sugarcoat it - this is a really crappy development. When CF takes over an organ, there is no undo. Instead it's a reminder that there is no cure for CF. The best we can hope for is to slow its progression, which also sucks. Did I mention how much I hate CF? I really hate it.

    Aaron has done a truly remarkable job of challenging CFRD head on. He did not wallow. He did not pull the covers up over his head and hide. He did not miss work. He did not scream or yell. He did what he always does when he hits a roadblock - he set his entire focus on tackling the issue. He was diagnosed at 2pm and started working with his care team at Hopkins on long and short term solution planning at 2:30pm. He learned as much as he could about managing his blood sugars and injecting insulin. Diabetes in all its forms does not have a cure. The best Aaron can hope for is managing the detrimental impacts of CF and now CFRD. Aaron will not be the first or last patient to be diagnosed with CFRD. The Cystic Fibrosis Foundation and Aaron’s care team expect that as he ages additional complications of CF will surface- CFRD is just one of the many ugly surprises waiting for Aaron. Did I mention how much I hate CF? I really really hate it.

    I haven’t been nearly as resilient as Aaron about the progression of his CF. I’ve been really really mad. Mad that it is happening to him. Mad that there isn’t a magic solution. Mad that his CF will now focus on shutting down other organs. Mad that research isn’t moving fast enough. It all feels especially crappy since last year was such a breakthrough for CF gene therapies. How did we go from such a high to such a low in just a year? Did I mention how much I hate CF? I really really really hate it.

    I can honestly say I’m not looking particularly forward to Great Strides this year, but I’m also not willing to let dumb, stupid, crappy, CF win either. So we are headed to Pittsburgh for this years’ 5k and we would really appreciate your support. If you are interested in running/walking with us, please register for Team Aaron. If you are able to donate-please help us fund research to find a cure for all parts of CF. If you are able to call in a miracle be it via prayer, levitation, or positive energy please don’t delay. CF sucks. Let’s beat it together.