It's hard to comprehend your granddaughter going from a very active little soul to being in severe heart failure in the blink of an eye.  I look back at photos of our sweet Sadie and there were just no clues.  She was your typical blond haired blue eyed little princess and now 8 years later she's in a fight for her life.

Sadie has been diagnosed with Carvajal Syndrome- which is a mutation of Naxos disease. It’s incredibly rare and difficult to manage. Less than 100 people worldwide have ever been diagnosed with this disease.  

The doctors implanted an Implantable Cardioverter-Defibrillator (ICD) and she is being monitored for further heart failure and is beginning the transplant evaluation process at UF.  Sadie is on a lot of expensive stabilizing medication and requires a wheelchair for any activity that lasts longer than an hour in order to participate.  Her mom is currently in the process of applying for a service dog to help monitor Sadie's heart rate. She can never be alone or without medical supervision because of the severity of the disease.

To say all of this is overwhelming is an understatement.  What provides us strength, comfort, and peace is our faith in God.  Amazing support and encouragement from incredible friends, family and even strangers.  Unconditional love and comfort from our church family and stability in the knowledge of the medical teams who have all surrounded Sadie with confidence.

Rose wrote in one of her updates the following:  "For the past eight years there hasn’t been a moment that goes by that I didn’t think “yep, that’s Sadie” because she is so much her own unique rare little person. She’s vibrant and intelligent and an absolute ninja. I’ve always joked that she’s my CIA baby because she’s sneaky and independent and such an absolute joy to be around. She keeps me on my toes. 

So it doesn’t surprise me that I was set down by her cardiologist today and they told me that they’ve discovered what’s caused Sadie’s heart failure- and that it’s an incredibly rare disease. So rare that there’s no literature on it and very little in medical journals. So rare that there’s no known cure for it- 

And while there is a part of me that wants to grieve and cry out and curse the universe- there’s so much more of me that says “that’s so Sadie” and then a bigger part of me that clings to the fact that she’s so incredibly unique- if ever there were to be someone that gets diagnosed with an incurable disease and then shows the world what they can do in spite of it- it would be Sadie. 

I put my faith in the Father. To walk with her. To remind us that it’s in his hands. 

The unknown is terrifying- but she’s not walking this alone. I’m not walking this alone. This is the path that’s set upon us and we will walk it hand in hand- together- with God and with all of our friends and family and every doctor and nurse."

All of you carry us when we can’t walk, hold our hands through every moment- thank you isn’t enough. Sadie has a long journey ahead of her.  Please pray , donate or share this with your friends and family.