Thunderbolt

On Wednesday, Jacob put up the bravest Instagram post I’ve ever seen from him. In it, he talked about how cystic fibrosis has not only affected his physical health, but his mental health. This took courage because this young man is only 17. Throughout the years, he’s struggled with what it’s like to have CF, and what it MEANS to CF. So much of his life has been defined by being Jacob Malchus, the son, the cousin, the best friend, that boy in school or church who has CF, he wondered what it would mean not to have something that has been a part of him for his entire life, even though it’s a chronic illness. That’s a pretty tough question, one that most adults would have difficulty answering, let alone a teenager. Being his father, I’ve witnessed Jacob’s struggles first hand. I’ve lost count the number of times I wished I could reach in and remove CF from his body. It’s every parent’s dream that their child stays healthy. On their way home from...

Hello again, It’s that time of the year when we once again reach out to our friends and family to help support us in our quest to find an end to cystic fibrosis. Each year, our family walks in Great Strides, the Cystic Fibrosis Foundation’s 5K Walk-A Thon, in support of our son, Jacob, now nine-years-old, and all people who suffer from this life threatening illness. As you may know, Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. Because of the illness Jacob, must sit through at least two daily breathing treatments and take an assortment of oral medications, including enzyme pills with each meal. We’...

It's been quite some time since I've written a blog entry here at thunderbolt, I fear that I've questioned what worth I have in adding my voice to the blogosphere. Anything I wanted to get out of me usually wound up in the Basement Songs posts over at Popdose, so what else could I really say? Today I have wonderful news I want to share. This week the Cf Foundation made a reamrkable announcement that has spiked the hope of every CF parent. I'd rather give you a link to the NY Times article than to try and explain it myself. So here it is: http://prescriptions.blogs.nytimes.com/2011/02/23/vertex-says-cystic-fibrosis-drug-helped-patients-breathe-easier/ Pretty exciting! Another reason I haven't written much has been my efforts to get my first novel complete. After two years of writing, though, I sent it off to NY in hopes that it will get read by a publishing company and stir up some interest in my skills as writer. With the manuscript out in the world, it seems like ...