Has anyone else looked to see how much money we’ve raised?!
What’s even more insane is that in less than two years we’ve raised
almost $10,000 for the Smith Lemli Opitz Foundation!
Guys… (I’m about to get sappy on you here ) I cannot tell you how thankful I am for each and every one of you. Every dollar, every mile, every hug and cheer has made this possible! Team Damian isn’t limited to just those of us who run, it’s all of you who have supported us and this cause. It’s been a crazy journey being Damian’s mama, but I know I am so incredibly blessed to be surrounded by all of you. I hope you know I never take it for granted! Also, I’m not the only one moved by your support. I’ve received numerous emails and messages from other SLOS families who are so appreciative and wanted me to let you all know their thanks as well.
I’ve often wondered how I got to be so lucky and have Damian doing as well as he is. If you didn’t know any better, you’d think he was just a healthy little toddler. And sure, there are still behavioral and learning things we are waiting to figure out, but for the most part, our little man is fine! But that’s what is so frustrating about this syndrome. It has such a broad spectrum. There are kids like Damian and then there are poor mamas who only get to hold their babies for a few hours before saying goodbye. And then there are all the kids in between who require constant attention and care because of their handicaps and medical issues. After getting to read the stories and struggles of so many parents on the SLOS Facebook group, I realize over and over again how insanely blessed Nate and I are by Damian. But I also realize that this blessing means I must pay it forward. I have the time and energy that a lot of SLOS mamas don’t have to raise money and awareness. And so I will keep doing just that with your help! The SLOS Foundation uses the money we raise to pay for research programs and conferences to help find treatments. Because SLOS is so seemingly rare (although there is some debate about the number of undiagnosed cases) many insurance companies will refuse to cover treatments because there is not enough research out there to “prove it works.” The SLOS Foundation helps these families pay for the cholesterol supplements and other medicines that these families need. It is an invaluable resource to the SLOS community. So thank you again to everyone who has donated financially to Team Damian!! It’s gone to a great cause!
The donation page for Team Damian will be up through the end of February for anyone who decides they would like to still donate (you know, like if you were waiting to see if we’d actually run or not…) I promise a marathon update and Disney update soon. We got back last night from our trip and are still recovering… It was some kind of trip alright… But like I said, more on that later.
Thank you again to everyone!!!!!