As a young girl, Remi Savioz wanted one thing. And no, it wasn’t a puppy, a bike, or even a trip to Disneyland…

What Remi wanted was a GLUT1 DS cure:

When they give me a cure, I am going to have a party with birthday cake and invite friends. I want to be like a normal kid and eat normal food.”

Unfortunately, as described in full on Rareconnect.org, when Remi was diagnosed in 2008 at about eight years old, there was little reason to party.

At the time, only 100 cases of GLUT1 DS were known worldwide, and there was little to try to repair the toll that years of sickness and seizures had already taken.

Only an especially restrictive ketogenic diet—which is high-fat and relies heavily on oils—helped Remi’s GLUT1 DS symptoms. In exchange, it wreaked havoc on her nutrition.

By the time she was 11 years old, Remi was facing kidney stones and brittle bone disease in addition to her GLUT1 DS.

Needless to say, Remi’s cure felt like a child’s fantasy.

But Remi and her family have never given up on that dream. They are determined to make fantasy into reality, which is why the RSG1 Foundation exists.

Formally the Remi Savioz Glut1 Foundation, RSG1 shares its namesake’s “tremendous enthusiasm for life.” It’s completely volunteer-run and so 100% of its proceeds go toward raising awareness, advancing therapies, and funding research for glucose transporters and glucose metabolism.

In the end, who can say how close we are to Remi’s cure? But with people dedicated to the cause, there’s hope that chronically ill children like Remi will eventually have their cake and eat it, too.

Donate to or volunteer for the RSG1 Foundation here. And if you ever start to lose hope or feel like you’re just one person, remember that people have changed the world for their loved ones.

Read how another foundation was born because this father would do anything for his dystonia-afflicted daughter.