saving eliza

September 25, 2014

four years ago, whenever i pulled out my laptop, my then-one-year-old nephew would drop whatever he was doing and scurry over to me (either on his hands and knees or on wobbly, toddler legs), climb into my lap and get his hands on my mac. footballs! i wanna watch footballs! (he couldn't yet pronounce the lls, and he loved the s at the end, so it came out more like footbawss!). we watched a lot of aggies football highlights. we watched a lot of pro football highlights, too. one of the videos he liked was nfl's back to football ad from that year. it featured one of the first songs he'd learned to sing because we watched that video so often.

he's five now. he doesn't crawl into my lap anymore. in fact, it's a pain in the ass to even get the boy to give me a hug. (but he loves football, and he loves the aggies, so my attempts to brainwash him have worked.)

this morning as i surfed the web while i was waking up, i came across the story of four-year-old eliza, an adorable child suffering from a hideous disorder called sanfilippo syndrome. this vicious disease will slowly rob her of the ability to speak, to walk, to run, to dance... to sing. it will ravage her brain and body with seizures. it will kill her if it's not stopped. and it can be.

but it will cost a LOT of money to stop it. a couple of million dollars. a ridiculous amount. and raising that much money to fund a clinical trial in which their daughter may or may not be able to participate seems like a ridiculously hopeless thing. maybe it is. but they started a gofundme campaign anyway. they've raised more than a million dollars so far. and they've challenged people to sing two lines to their daughter to help raise awareness, to help raise the money. 

i thought all day on the two lines i could sing. i thought of bill withers' lean on me. i thought of pharrell williams' happy. and then i thought of my nephew. of the songs he most enjoys. and i remembered high hopes. 

and it's perfect, really. because i do hope. and my hopes are high.

so... here's me singing my two lines. and i challenge you, dear readers, to sing a couple yourselves. and maybe, with a lot of help and courage and love, we can save this little girl and others like her.

No comments:

Post a Comment