Rees just drove away for a 7AM appointment at the hospital, where he will receive his first fistful of Kalydeco and VX-809. After months of preliminary screening exams and waiting on recovering stability from a tough spring, he will swallow down brilliance. Even if he receives the placebo, in six months he will get the real thing, so the march has begun. He is paid for offering his body to science (as he says), which is always attractive to an eighteen year old!
I don't even know the names of the scientists, doctors, researchers, and whatever other job titles who are involved; but I love them. I hope they are paid well (and this is why we happily support the CF Foundation and aggressively oppose socialized medicine ~ ambitious, talented people should be paid.). I hope they keep working. I hope there is a way to express my ... thanks, love, respect... all of it and more.
We've been crushed with disappointment so many times over the years that I'm OK with smiling, but never allow giddiness. It is a trepidatious hope. The first seven years or so, even though he wasn't healed, we were going to take control and have him be the healthiest CF kid in the world. I cooked right, cleaned right, exercised him right, did his lung chores right. But CF is still CF and he still needed hospitalization after hospitalization. Then I was introduced to the World Wide Web and learned that some kids had never been hospitalized at all (It truly takes its course differently in every body without prediction, even with similar mutations.). Disappointment after disappointment, CF controls. Now, aside from skeletal management (lots of butter, ice cream, and gravy; stay away from hot tubs and dripping, sneezing noses), we live. Everywhere. Because remaining in a filtered home with none of us ever leaving (and bringing home bugs) or knowing other people, even with CF, is not living.
Here's a possibility that a handful of pills can unfold the CFTR protein, and, well ...
We'll see. We'll just have to see.