One Amazing Kid

By Laura Edwards

JakeI know a 13-year-old kid named Jake Everett. Jake is the same age as Taylor and used to go to her school; they’re not classmates anymore, but that didn’t stop Jake from deciding to take on Batten disease, all on his own.

Jake set up a website at By the end of the first day, Jake had his first donations, including his own. Today is the site’s one-week anniversary. So far, Jake has raised $427; he hopes to raise $1,000 for Taylor’s Tale.

I can’t think of anything more awesome than kids helping kids. That’s why I love the piano playathon for Batten disease, an inspiring event that has grown from a few students playing in their teacher’s private studio four years ago to nearly 200 playing in multiple venues earlier this year. That’s why I could barely contain my emotions the day hundreds of kids at Taylor’s school turned their gym into an endless sea of sparkly pink and purple glitter and cardio crazed their way to raising more than $3,500 for the fight against Batten disease.

As an adult, I’ve found life to be quite complicated at times. Batten disease, and the domino effect it ignited in my family nearly six years ago, sure didn’t make things any easier. But as my mom likes to say, adults could stand to learn a thing or two from the kids, perhaps even more so in times such as these. Because kids just “get it.”

This spring, I asked our board members to¬†write elevator speeches for Taylor’s Tale. In the meantime, I struggled with my own. My first draft sounded nice on paper; to deliver it verbally, though, I’d need to catch a ride to the top of a 200-story building. But Jake gets it:

Why this campaign?
Because Taylor King is a nice girl and Batten Disease is terrible. With enough money we can find a cure.

Yep – that’s a good enough reason for me. I could agonize over word choice all day. I could write something fancy. But in the end, I really just fight Batten disease because it’s terrible and it takes the lives of nice kids like Taylor. And if enough people BELIEVE, we WILL find an answer.

Please help Jake reach his goal of raising $1,000 for Taylor’s Tale! Visit his website at to learn more about his campaign. When you’re ready to give, simply click ‘Donations’ to make a secure online donation. Then, share it with everyone you know to help spread the word about Jake’s efforts and the fight against Batten disease. Thanks for helping this amazing kid save kids like Taylor!