My Biggest Fear......

 

 

I came across an article and video this morning, Raising a Family with Cystic Fibrosis.  The dad is a CF dad and pretty much summed up what I have been thinking since July 25, 2012 when I opened Cade's newborn screening letter -

              “My biggest fear is that I outlive my children – simple as that; that shouldn’t be.
               And I don’t want that to happen. That’s where it begins and ends with the fear.
               I don’t want that to happen.” - Pat Randle, CF Dad.

I don't know the guy and had never heard of him until this morning.  He said what we all think but don't want to say out loud. 

I will continue to spend my days researching and raising awareness and doing whatever I have to do until Cade is cured because he WILL outlive us.

Never Say Never

As I was driving home from Christmas shopping last night (while my husband was napping) I was thinking about the new "miracle" drug that will help all with CF, including Cade.  The last great treatment, Kalydeco, could only help a small population of CF patients with specific mutations.  Kalydeco is almost $31,000 a month!  I have no idea how much this new drug will cost, but Cade WILL have it if it is what he needs to keep him healthy. 

When you have a child, things change.  When you have a child with an incurable, terminal illness things REALLY change, the way you think changes.  After we found out how much the Kalydeco was a month, we knew there was no way we could afford it.  You hear about people doing WHATEVER they have to do to help their sick kids stay healthy.  In the car tonight my thoughts went back to when we found out about Kalydeco - could we get it on the black market?  Would we have to go overseas to obtain it every few months?  We would do it if Cade needs the Kalydeco or if he needs the new drug.  Hopefully, we won't have to resort to these means of getting his meds, but................

I have done more praying in the past 864 days than I have in my whole life.  I pray not for a cure for Cade, at this point, but for him to be healthy on a daily basis and thankful when we make it through another healthy day.

Anyone who has ever said that they "would never," my hope is that they never have to.