Thank you for visiting my fundraising page. This is my first post here, so let me tell you what's been going on and what I'm trying to do.
I was diagnosed in 2007 with Relapsing Remitting MS. That basically means that every once in a while my immune system decides that my nervous system is an invader and attacks it. This can be brought on by a cold, stress, heat, or just being overtired. I have 4 kids. There's no way to avoid any of that! The doctors told me when I was diagnosed that it looked like I'd had MS for a really long time. Probably since my teens. I just turned 40. I'm ready to be done now.
There is no cure for MS. But recently I found a study they're running in Chicago where they harvest a patients stem cells, give them chemotherapy, knock out their immune system and then replace the stem cells. Basically rebooting their immune system. It has an 86% success rate! It's due to be approved by the FDA in 2022. I can't wait that long. I don't want my disability to progress.
If I get accepted there is a good chance that my insurance will cover most of the medical stuff. But, there's more to it than that. I'd need airplane tickets to Chicago, a hotel room for the few weeks in between hospital stays and there's a possibility that I'll have to bring someone with me so I'm not alone in the hotel. I'm not sure what the rules on that are yet. There's also a chance that I'll be put in the "control arm" of the study. Which means they'll put me on an approved MS drug and recheck me in 6 months. If I've gotten worse they will probably switch me over and give me the treatment. That's a lot of flights back and forth to Chicago.
My other option is to travel out of the United States and have this done in Toronto or Mexico or one of the other five or six facilities that are offering this treatment. If I travel out of the country my insurance will not cover anything. That would definitely be out of network!
So, I've sent my initial information in to the hospital in Chicago and I'm still waiting to hear back. I am not going to give up. My family needs a fully functional mom and I'm determined to make this happen.