Sawyer was diagnosed with Sanfilippo Syndrome on June 14, 2016.
Don't Google Sanfilippo Syndrome unless you have tissues nearby and plenty of them. It's absolutely the most heartbreaking disease on the face of the earth. My sweet Sawyer is going to die. I know, I know we're all going to die but this disease is a slow painful, debilitating disease.
Here's the science of it all:
Children with Sanfilippo Syndrome lack an enzyme required to recycle the heparan sulfate, one of the many complex sugar molecules (the GAGs) the body needs, resulting in extra storage of these molecules in the cells. Each enzyme is coded in a specific gene: an error on that gene results in the deficient production of that enzyme.
Here's what it all means:
Think of childhood Alzheimer's, that's exactly what it's like. Even as I write this I can't quiet put it all into words. Sawyer is three right now and between the ages of 5-7 she will lose her ability to speak, walk, go to the bathroom on her own. She will have many respiratory and sinus issues (already has) as well as cognitive and developmental delays. She will eventually have seizures and her body will ultimately shut down. She will be lucky to make it to her early teenage years. Sounds dramatic, huh? A lot to take in?
Here's how you can help:
1. Follow Sawyer's Story and like her page on Facebook:
2.Support us by spreading awareness. Tell your family, your friends, every single person you come in contact with!
3. You can help financially. Because here's our ONLY hope: there are clinical trials going on right now for this disease and there's GROUNDBREAKING research and findings for what hopes to be a cure. The only setback; money. I hate money. Of course it's limited, it always is. I've never been a campaigner. It's not how I roll. I like to keep the peace and go about my business. But, I'll tell you one thing for free if MONEY is the only thing that comes between my daughter staying alive, I'll shout it from the rooftops. I'll spread awareness like it's EVERYONE'S business. Because it is. You can help. We partner with an amazing foundation called: The Cure Sanfilippo Foundation. It's incredible. The money they raise goes to help fund these trials, it goes to curing my daughter and many others like this awful thing. Please consider a donation. Every single bit matters, every piece counts.