Monday, February 6, 2012

A Big Thank You

A week has gone by and saying that Kalydeco has been approved is no longer an overwhelming shock to my system, we’ve absorbed the news and are trying to learn what the next steps will be for our family.

But for all of you that have done research trials in the past that have gotten us to this point, and for all those who are still waiting for their own miracle drug – I just want to emphasize that we have not forgotten any of you. We will never let Gavin feel like he is entitled to this drug. He will forever know the hard work of countless doctors, scientists and CF patients before him. He will know from this early age that nothing like this comes about without hard work and dedication. We are doing what we can to get him into the pediatric study to thank those who have participated in the past, and our way of paying it forward to those who are patiently waiting their turn.

To clarify – we are not sitting back on our heels waiting to get on this drug. Just ask Gavin’s pulmonologist how many emails I’ve been sending her for months – constantly asking if there is any new news on the upcoming study. BUT, we are doing what is ethically and morally right. We are going to work WITH the CFF and WITH Vertex. We are going to provide as much data possible. We are going to make sure Gavin is closely monitored throughout each stage of the study – and not just his physical status, but his mental and spiritual status as well. At the first sign of danger we’d pull him out – but we believe that tossing our kid a pill that has never been studied in a child his AGE (not his size, his age) is irresponsible. Every drug has a different effect on everyone, we’re going to march forward as veraciously as possible while simultaneously being cautious. We want this drug to be available to everyone – and Gavin needs to learn now that research is what gets us there.

So THANK YOU. Thank you to the scientist’s at Vertex – to all of the scientist’s studying CF. Thank you to the CFF and every CF charity. Thank you to all of the doctor’s who spend their lives dedicating themselves to this disease. Thank you to those who have EVER done a research study at any level – it took a piece of all of those to even come up with the concept of this pill. Thank you to every person with CF, or parent of a CFer who whole heartedly told me how happy they were for our family. Thank you for feeling like you could also explain to me how hard it is to know that you or your child don’t qualify for it, and the mixed emotions that are there – it makes me feel pretty darn special to know that you can open up to me like that.

And THANK YOU to every single person who has ever donated even a penny to the CFF, or any CF related charity. I am proud to be a part of a community who believes that your donated money needs to be going to RESEARCH – and Kalydeco is tangible proof that your money is going where it belongs. People often ask me why they don’t see commercials on tv advertising events, or why there isn’t apparel lined up in the stores – because we believe that the money you give us isn’t meant to go there – the money you give is to save lives. You will most likely hear about CF events through word of mouth, or the rare advertisement because we put the money where it belongs. Beyond grateful that Gavin - and Casey and I - are in the midst of such an amazing community.

We are acutely aware how lucky we are with Gavin and his health thus far. Knowing that many have passed away, or have been too sick to benefit from this drug is a thought always in the back of our minds. I too wish this drug was possible many years ago, but at the same time feel very blessed that it’s happening right now. No CF patient is more important than another, but an adult whose disease has severely progressed is in the need to be on this drug immediately. We are lucky to be in a stage where yes, we want him on it as soon as possible, but that waiting a month or so to figure out what path we’ll be headed down does not mean immediate life or death for Gavin as it does for many others. We’re attempting to quickly move forward as ethically and as safely as possible.

Thank you.

Thank you. Thank you. Thank you.

1 comment:

  1. I'm really happy to hear that you have the opportunity to work with these people, and make strides to a better future for CF patients!