Running for Taylor in 50 States: Virginia

By Laura Edwards

When I crossed the finish line of Charlotte’s Thunder Road Half Marathon blindfolded in November 2013, I knew the race would be a tough act to follow. But I didn’t intend to stop running for my sister, Taylor, and our fight against Batten disease and other rare diseases.

On National Running Day 2014, I shared my plan to run a race in all 50 states – a feat not as rare as running 13.1 miles blind but one that I hope will help me spread our story far and wide.

On Good Friday, John and I drove to Charlottesville, Virginia for state number six and the Charlottesville Half Marathon and 8K. continue reading →


All that is Good

By Laura Edwards

This morning, Mom called and told me to turn on the TV to catch a story on CBS about a high school student with a developmental disability. Mitchell, whose mother sat on the Association of Junior Leagues International Inc. (AJLI) board with Mom and still keeps in touch, loves basketball more than anything and serves as his school team’s student manager.

Before the last game of the regular season, Mitchell’s coach told him to dress out. Just wearing the jersey would have been enough for Mitchell, but his coach planned to play him. And with 90 seconds left, he put him in. But no matter how many times his teammates got him the ball, he couldn’t score. That’s when something amazing happened. With seconds left, a player on the opposing team in-bounded the ball to Mitchell. Mitchell took one dribble and launched the ball into the air; time stood still as it floated above the basket and dropped through the hoop for the last score of the game. It didn’t have the drama of a game-winning shot – the final margin was 15 points – but the bleachers emptied, and the home crowd carried Mitchell off the court.

Watch Mitchell’s Story

I can’t count the life-changing moments my little sister has experienced thanks to kids just like Jonathan – the opposing player who passed the ball to Mitchell.

Taylor’s girlfriends at the Fletcher School, the small, private institution she attended for six years, made sure she had a place at their lunch table, even though she couldn’t always keep up with their conversations and needed help finding items in her lunch bag.

They made a place for her in the talent show each winter.

taylor_fletcher_friends

They kept her in the thick of the action at the school dances in the cafeteria.

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All of the boys – and one in particular – made her feel like Cinderella at the ball.

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They never teased Taylor when she began using a cane to find her way around the hallways and classrooms at school.

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Her Girls on the Run teammates cheered her on to two 5K finishes. On the day of the team’s practice 5K before the first race of the year, everyone joined Taylor on the track for her final lap.

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They included her in every photo op.

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They took her out for nights on the town.

girls night out

To help the adults fight Batten disease, Taylor’s friends organized fundraisers for Taylor’s Tale.

They threw a PJ party on a school day…

PJ party

…organized a bake sale…

bake sale

…designed an online campaign…

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…and engineered a cardio craze dance fest with a local celebrity and LOTS of pink body paint and glitter.

Fletcher cardio crazies event crowd

Kids aren’t perfect. Some of them are bullies. But the kids who’ve come in and out of Taylor’s life over the years have had an uncanny knack for putting a big smile on her face and making her laugh. And I’m not sure if I could find a doctor willing to back me up, but I think all that love and joy have a positive effect on her physical health. If not for the pint-sized angels in Taylor’s world, I don’t know where she’d be today.

Batten disease is all that is evil.

The kids who have touched my sister’s life are all that is good.