My new role model

So I've been thinking that I'm going to make an effort to post more positive things on here and not just my current mood. I'm going to try. So here goes.

I have a new role model to look up to. I seriously didn't think that adults had role models but I do so just go with it. My new role model is this lady who I read about who I can't even remember her name. Some role model she is, you may be thinking but just wait and you'll find out why. Ok so here is her official story and blog http://addiandcassi.com/ but here's my totally unofficial quickie version. Addie and Cassi are twins born with this rare disorder that is called the Childhood Alzheimer's and its got a 100% fatality rate. Sucks huh? But wait. So this mom goes into SuperMom mode and starts her own research and finds out that the active ingredient in Frebreeze is a chemical that is given to her daughters in the right dose will keep them alive. Sounds crazy huh? So she goes to all these doctors trying to get a doc to inject her kids with Frebreeze. Finially she gets a doc to take her seriously and he tells her if she can get the FDA to approve of a case specific clinical trial he'll do it. So she learns how to submit the right papers and she files. They agree and poof! before you can say "so fresh and so clean" her girls are doing better! Now the problem is that these girls are getting injections multiple times a day and they can't keep this up because the Frebreeze needs to really be injected in their brains, so once again Mom gets these medicine injector pumps and is reconfiguring it to fit her kids' brains. She's a MOM, not like she used to be a genetic doctor and now she's a mom but a mom who loves her girls more than anything and had refused to just take the diagnosis and say ok. She is pouring herself into this, and this will not only help her kids but others, the rare kids who's lot in life is to have this death sentence placed upon them. No she is turning the medical world upside down because she isn't some fancy shamachy doctor or professor. She's a mom. A mom with stones. She made the gut wrenchingly tough decision to say well they are going to die if I don't try and if I do try they could die. I- I will try. Then she wouldn't take no for an answer. And that is who I want to be. I do not want to go gently into that good night. People say " well God gave Chloe to very special parents" and you know maybe they're right, maybe God gave us Chloe because He in His infinite wisdom knew that I would rage, rage against the dying of the light.