I am a little worried that I have to much hope for VX-770, the drug coming out in April that will correct the basic defect of CF in patients with a certain mutation. While we don't have the mutation that the drug was tested on, we have a mutation within the same class of mutations, and researchers are hopeful that it would affect all folks within that class similarly. It removes the clinical signs of CF. Sweat chloride is normal (read: he won't taste like salt when you lick him). The mucus in his body would be more like yours and mine, working for the good and not harboring harmful bacteria and clogging organs and sinuses and causing disease. I feel like I'm just waiting for April for our "cure", and I'm afraid I'm giving it to much hope because I don't know if it will work for us or not. The positive thing is that if it does not work, there are so many other drugs in the pipeline, and surely one of them will be able to help us. 2010 was a good year to be born with CF, if you have to be born with it at all. I guess its not bad to have such hope!
So with that all, I am ready to start my 2012 Great Strides Campaign. I've said it once and i've said it 1000 times, Cystic Fibrosis receives no federal funding because not enough people have it for the government to care. It breaks my heart and pisses me off, but the only thing I can do is to raise my own money for the research and the drugs that we need to keep Drew going. Take a moment to watch a little video about what our life with CF is like, and if you can find it in your heart or deep in your pockets to make a donation, I will be forever grateful.
To make a donation, please visit our Great Strides donation page by clicking HERE, or by clicking on the widget on the lefthand side of my blog called Great Strides. I will be forever grateful if you can help to save my sons life.