No one has ever just heard of Friedreich’s Ataxia, unless they know someone with it.  And why would they?  It’s rare (about 1 in 50,000 people in the US are FAers like myself), never mentioned on the news, and you’re never asked to donate a dollar to it in the grocery store like muscular dystrophy (though I am technically a Jerry’s Kid- MDA covers FA).  And it’s definitely not something a writer would give to a fictional movie character.  Until now.

Though it was made a few years ago, The Cake Eaters is finally being released starting this weekend.  It’s directed by Mary Stuart Masterson and stars Kristen Stewart as a girl with FA.  I’m dying to see it but dates for the Philadelphia showings aren’t available yet.  If you’re interested, check here to see if it’s playing near you.

I’ve read a lot of articles about the film recently and most, like this one, refer to Kristen Stewart’s character as “terminally ill”.  While I get that they’re just trying to briefly sum up the severe physical effects FA can have as well as its progressive nature, it’s not a terminal illness, and I hope the movie doesn’t paint it as such.  (FAers often develop heart disease, but it is by no means universal or inevitably fatal).  But I’ve heard positive reviews from people who know FA well, so I’m hopeful.  The minute it comes out in Philly, I’m wheeling my non-terminally-ill ass down to see it.

Here’s a trailer:

And finally, Mary Stuart Masterson, as quoted in the above article: “Do people with disabilities want to have sex? Of course. Everyone who is breathing wants to have sex!”  Indeed.