Wednesday, July 18, 2012

We Struck Gold!

How does one begin a post to let the world know that their child has been granted the gift of life? It is with a very full heart and tears of joy that I would like to announce to the world that Savannah has landed upon the pot of gold at the end of the rainbow! 

I cannot find adequate words to describe how happy we are right now! As some of you know, I called our insurance company on Friday and got a real human being on the phone in the appeals department. He listened patiently to my plea for help and asked me to fax Savannah’s new data to him. I had a good feeling inside, but I didn’t want to get my hopes up too high. Today I got a call from the same pharmacist I spoke to on Friday. He delivered the wonderful news that Kalydeco has been approved for Savannah through October of this year! What a difference one person can make! With positive results in October, it should be approved ongoing.

Savannah is not out of the woods yet. She has a long road ahead of her, but a road full of hope. She will continue to be on breathing treatments daily and take many of the meds that are currently prescribed for her. Our hope, however, is that she will show the same great improvement (or better) than she did back in April and get her lung function up to levels we haven't seen in a very long time.

To those who contributed to Savannah's medical trust fund, thank you very much! The funds can legally only be used for Savannah's medical assistance and will be kept safely for her should a need like this one arise in the future.

If you haven’t seen this video before, please take time to watch it at least once. It says what I can’t. Please continue to follow us and watch a miracle unfold as Savannah gets Kalydeco back in her life. Thanks to each and every one of you for your support. It means more than you will ever know!

Dream big and never give up because…somewhere over the rainbow, dreams really do come true! 

Sunday, July 15, 2012

Please take a moment to watch my video.  Read more about my story from my mom's post below.  Thank you for stopping by to visit!  Please be sure to leave me a comment on the Guest Book page.  Thanks again!

Savannah's Journey

Thursday, June 28, 2012

It Was the Best of Times...It Was the Worst of Times...

It was the best of times, it was the worst of times….so goes the famous line that rings all too true in our lives right now.

For those who don’t know, a life-changing new medication for CF, called Kalydeco, was approved by the FDA in lat...e January. This medication was designed for and clinically tested on one CF mutation—not one of Savannah’s mutations. However, I read a blog about two months ago from a young lady who was experiencing great results from using Kalydeco “off label”…and guess what….she has the same mutations as Savannah! After reading the blog, I couldn’t wait to get an email off that very night to Savannah’s pulmonologist. After much begging on my part, he agreed to write the prescription and thought as I did—what will it hurt to try it?

I was so excited when we got our first bottle of Kalydeco filled with no questions asked from the insurance company. After just 28 days on the medication, Savannah’s lung function (FEV1) increased from 46% to 57%---11% in one month with no antibiotics! This is the highest number she has seen in 3 years! She also got a sweat test the same day as her PFT and her sweat chloride level (much higher in CFers) dropped 30 points. We were ecstatic to say the least!

Imagine our despair to find out that our insurance company is denying her the medication because it is not FDA approved for her specific mutation. Even after her doctor submitted an urgent appeal with detailed documentation, she is still being denied coverage.

Why not just buy it outright? This medication costs $25,000 per month! Yes, I got all of the zeros in the right places. That’s $300,000 a year! It truly breaks my heart to know that I cannot provide my child with this “miracle in a bottle” because of the cost.

We are fighting in every way possible, including writing another appeal and involving an attorney. I feel as if I am in a bad dream or a movie—a movie that I am praying will have a happy ending. It may mean starting our own foundation, but we will find a way to get Savannah what she needs.

I leave you with a drawing that Savannah made for us a while back. Not only is it beautiful, but I think it is especially touching when you read the quotation on it and consider what I have just shared. She’s keeping her chin up in the midst of this storm and “dancing in the rain!” I love you SO much, Savannah!

Originally posted on Facebook
by Teresa Fuller (Savannah's Mom)