My sister has a 501(c)3 non-profit organization named for her. She’s the face of Taylor’s Tale and the inspiration for the work we do. People from North Carolina to California and the United States to Australia have heard of Taylor King.
We could name a building or a wing or a monument or a garden for my sister. We could adopt a mascot influenced by all of Taylor’s favorite things. We could put her name on an annual event to make it more difficult for the public to forget her.
But none of those things will help future Taylors. None of those things will save lives.
My sister’s very sick. We’ve never denied that fact. We’ve fought like hell to keep her healthy. We’ve fought like hell to beat Batten disease till it couldn’t come back.
But now, tomorrow is today. I run as fast as I can, but some days, I just can’t run fast enough.
I fight for Taylor because I love her. I fight Batten disease because I hate its guts. I fight rare diseases because I don’t think 350 million people deserve to be told their disease is “just too rare.”
But I don’t want a trophy for anything we’ve accomplished. Batten disease is still killing kids, so we haven’t achieved what we set out to do. And I think Taylor’s life is worth more than a thousand trophies.
I just want an answer for people like her. I BELIEVE we’ll get there. And one day soon, when scared parents sit in the bad news chairs in a doctor’s office somewhere and the doctor says, “It’s very serious, but this is what we’re going to do together to fix it,” THAT will be her legacy.
My little sister turned 15 in August. I can’t talk with her anymore, but her smiles and laughs offer a glimpse of the Taylor I know is still in there, bottled up and fighting, always fighting against the monster in her genes. Her quiet courage has inspired people across the globe to fight for a better world for people like her.
That may just be her greatest legacy of all.