Do you know about Hana Hwang? How has Hana's story touched you?
Progeria isn't one of those diseases that gets the pomp and circumstance. There are no ribbons or pink whoosies to draw attention to the genetic condition that makes a child age at such a rapid rate that they're only expected to live into the teen years. But they do have Hana Hwang, viral video star and 13-year-old progeria patient with an amazing attitude.
Hwang first made national news back in late 2011 when Ryan Seacrest arranged for her favorite singer, fellow teen Selena Gomez, to visit her in the hospital. But it's the video Hana made later, a tribute to her idol, that could change the way the world looks at childhood disease:
What did you see there? A girl who looks like an elderly woman, right? And yet, everything about Hana is girlish! Her favorite song, her favorite singer, her hobby of making bracelets! She's this happy, smiling little girl with a beautiful spirit, trapped in an aging body that, in turn, traps her in a hospital.
This is the problem with progeria. We see a wizened face, and I think there's the tendency to forget that even though these kids' bodies are aging at an exponential rate, their minds aren't. They are still just kids. They laugh and they cry, and they listen to Selena Gomez songs on repeat on their iPods.
I think it's true of so many of the childhood diseases, to be honest. These kids go through so much, they speak like mini adults with their medical jargon. They carry the burden of the world on their shoulders. Disease, whether it's something well known like cancer or rare like progeria, sneaks in and steals a kid's childhood away.
Admittedly a large part of why we don't know much about progeria comes down to the numbers. There are only 80 cases worldwide. That's super rare. Logistically, it's more appropriate to focus on diseases that hurt large numbers of kids.
But while Hana is bringing more attention to her struggle, she's reminding parents that it doesn't matter what their kids are struggling with, they need to look at the child first, not the disease. These kids deserve to be kids for as long as they can.
How has Hana's story touched you?