Last night, Matt and I attended our first "function" with the Colorado Chapter of the Cystic Fibrosis Foundation. In the six months since Avery's diagnosis, we've really only been able to talk with our CF clinic staff (who are fabulous) and one other mom of a 12 year old daughter with CF. And realistically, we still know very little about what we're facing, or rather, what Avery is facing. But last night was good spending time with people who know what we're going through all too well. Plus, we learned more about vests, we learned more about other families' experiences, we learned more about the science of the disease, and we learned a whole lot about current and future care for people with CF. It was a lot to take in.
Sweet Avery, I wanted to write down my thoughts from last night, because I hope someday you'll read these and celebrate just how far you, our family, science have come. I hope you are reading these words with clear lungs, with a strong and healthy body, and with the memories of all your hardships fading into the past. I'm not sure if that will be the case, but I pray it every day for you.
Avery, right now there is much to be celebrated in the world of CF research. There are a small percentage of CF patients who are actually getting better! There was a new drug approved recently (Kalydeco) which has helped people with a certain mutation, and it's been life-changing. We've heard stories about how people feel differently (more powerful, alive!) even after just ONE pill. It's a miracle. Unfortunately, this treatment doesn't work for you, so we wait and pray that something similar will come along someday for you. We don't know when that will be, but we pray it will be soon. There is no real "cure" for the damage that CF does to your body, but a cure will be found when smart people can figure out how to edit your DNA to make your cells work correctly. It's a crazy idea, but we hope for you and the 30,000 other people in our country with CF that it can be done.
At the event last night, we were able to rejoice with those who have been able to see improvement on Kalydeco (while silently mourning that you cannot be on it). We also learned that there are a few other drugs being worked on right now that they hope will help other patients with different mutations. Unfortunately, you've got two different mutations, so we're waiting for two different types of miracles... but we'll wait with lots of hope. We know it may be a long wait, and an expensive wait (Kalydeco cost Billions of dollars), but we'll do everything we can to get there.
Avery, I'm so heartbroken that your body is working against you. The weird thing, is that your body is actually the one destroying its own lungs. It is the hardest thing to do as a parent: watching your child's body function incorrectly knowing that it will only get worse and that you can't really do anything about it. And I can't explain why our loving God allows these kinds of things to happen. But yet we trust and hope and love. And we know that you are a true gift. And while we are so sad to know that your life will be filled with machines, drugs, hospital visits, research trials, sickness, likely lung transplants, and constant monitoring, we know that you will bless so many people with your experiences, courage and wonderful heart.
We are also sad that this disease is so isolating. There weren't any people with CF at the event last night, and you'll never be able to play with a friend who has CF. And to me, this just seems cruel. Like everything else about CF isn't cruel enough.
I hope when you are reading this that the CF world has changed dramatically. I hope you read with the joy of knowing answers have been found. But regardless, I hope you read this knowing that you are SO loved, and that while are hearts are broken, they are overflowing with love for you and your life. And though you may see your mama tear up from time to time, know that I want to be strong for you and with you. And that I love you.
I hope when you are reading this that the CF world has changed dramatically. I hope you read with the joy of knowing answers have been found. But regardless, I hope you read this knowing that you are SO loved, and that while are hearts are broken, they are overflowing with love for you and your life. And though you may see your mama tear up from time to time, know that I want to be strong for you and with you. And that I love you.
