ABOUT
Rona's FUN LAB

Rona Edwards was 1 in a million. When she was five, Rona got a one-in-a-million diagnosis. Despite their name, rare diseases aren’t actually all that rare. Approximately 10% of the US population lives with a rare disease and the majority begin in childhood. 

 

Rona beat the odds in a lot of ways. Eight out of 10 rare diseases have a genetic origin. Hers did not (at least that we know of). Less than 10% have a treatment. She had two options, one of which was cutting edge. It typically takes more than four years to get a diagnosis. Rona was diagnosed in four months. Thirty percent of children with a rare disease will die before their 5th birthday. Rona died from complications from her treatment two weeks after she turned six. 

 

Rona's greatest wish was to be Princess for a Day at Disney. Her second greatest wish was to help kids like her. She and her father began recording “Rona’s Rockin’ Fun Lab” after her diagnosis so other children could learn about science and transplants from a kid. You can see a couple of installments here.

 

In a year full of uncertainty and good and bad surprises, one thing surprised us more than most: Rona’s last breath was not the worst thing we saw. It was the death of her spark that was hardest to watch. (If you can’t fathom that sentiment, consider yourself lucky.) 

 

This is where you come in. Rona never made it to Disney, but with your help we can make her second greatest wish come true by creating a world in which we balance the magic of science and the magic of living for critically ill, hospitalized children.