BRENTWOOD, Calif. — Emma Pruitt was diagnosed with Angelman Syndrome in 2012. It's a rare genetic disorder that occurs in one in 15,000 live births. It's caused by a loss of function of a gene in the 15th chromosome.

People with AS have developmental problems, usually appearing in childhood and affecting functions like walking, balance, and speech. 

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Three years ago, Emma's brother Quinn wanted to do something for his sister, by raising awareness and raising funding for a cure. It started with a lemonade stand, then hot cocoa. This 10-year-old has gone on to raise more than $160,000.

"I never dreamed it could come from a lemonade stand to what we have today, not in a million years," Quinn said.

Quinn's mom Shannon has been blown away by the compassion demonstrated by her son. 

"At first I was sort of taken aback. I was so amazed and proud of him, in a way that as a mother you think I just want to make good human beings," Shannon said.

Since Emma was diagnosed, Shannon says investment in rare diseases has increased, bringing several trials to market soon, and bringing optimism to the Pruitt family.

"It's so incredibly hopeful and powerful as the parent to know that that's only going to get faster," said Shannon. "Because the more you learn the faster you can go."

Quinn set a personal fundraising goal of $200,000 four years ago to give to the Angelman Syndrome Foundation. He has gone on to raise $202,300 with more donations expected to come.

But no matter what he raises, his purpose it to keep on fighting until there's a cure for his sister.


"It's a grassroots event," said Quinn. "I'm working until the end."

If you'd like to donate to Quinn's effort, click here.