August 27, 2008

Local Family Launches Global Effort for Disease Awareness

2008_0827_marissabunny.jpgSome of us on staff here at DCist are unrepentant video game nerds, so we couldn't help but notice this posting yesterday on the gaming site Penny Arcade about Marissa, a 9-month-old Annandale, Virginia, resident who was diagnosed with a rare pediatric condition called Infantile Spasms (IS). Marissa's dad, being a gaming fan like us, sent the guys at Penny Arcade an e-mail asking if they could take one of Marissa's three stuffed bunnies named Fairfax — a tool Mike is using to spread awareness of IS — to their upcoming convention in Seattle to spread the word about her condition. They agreed, of course.

Why the bunny? "She had it with her in her hospital crib which looked like nothing more than baby jail during the day, and I clutched onto it for dear life at night. She had so many wires, cables, gooey electrodes, and other lines attached to her at any given time, I couldn’t just scoop her up and cuddle on her — the bunny was our lifeline to each other. "

Apparently Seattle is just the latest stop on Fairfax the bunny's travels. The stuffed animals also have visited Boston and New York City, spreading the word about IS, a type of epilepsy experienced in infancy that causes clusters of seizures and can lead to development problems. Marissa's father, Mike, started the site Marissa's Bunny as a forum to get to know other people dealing with condition. However, Mike told us, "with my daughter as sick as she is, I took the idea and ran way too far with it."

The Marissa's Bunny blog describes the condition:

Marissa’s infantile spasm seizures aren’t the same as a “stereotypical” grand mal seizure — they come in clusters, with each individual seizure lasting a couple of seconds. She can have as few as three or as many as fifty nine seizures per cluster. The whole event is normally over in ten minutes or less, but have gone as long as fifteen minutes.

Infantile Spasms is either a symptom of something larger, or it can be the disease itself. So far, Marissa’s only got infantile spasms as a disease and not as a symptom, but we’re not out of the woods yet. Around two years of age, with what’s called cryptogenic infantile spasms, they’ll either resolve themselves, or evolve into something nastier, and only time will tell on that.


Since the posting on Penny Arcade appeared, the hits on Marissa's Bunny have jumped from 3,500 over the past two months to 35,000. Mike told us, "It's too early to tell the long term effects of this traffic infusion and pressure it may place on companies and researchers involved with IS, but I am hopeful." The bunnies are busy traveling the world right now, especially with this latest boost of interest thanks to Penny Arcade. Mike is planning on taking Fairfax on a tour of D.C. and Northern Virginia when one of the bunnies makes its way home. For the time being, they're globetrotting to try and help this local baby girl and others like her.

If you'd like to help Marissa and her fight against IS, you can donate, send an item from her Amazon wish list, or order something off the Marissa's Bunny cafe press store. And of course, keep spreading the word and following Fairfax's adventures at marissabunny.com.

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Comments (3) [rss]

they should totally contact the makers of the bunny and see if they (gund, or whatever) will donate proceeds from the bunny sales to IS. And then sell the bunnies on the site.

 

We are working the problem.

At this time, though, there's no organization solely for IS- you can donate to the Epilepsy Foundation, but it goes into a general fund.

That's a problem I'm working too.

 

Gotcha! As a PR/Marketing person myself it seems like if the manufacturer of the bunnys were to be contacted, and buy in (i think it's sheer PR genius for them), they could faciliate the issue, or at least funnel funding/earmark it for IS. There has to be a way around this... hm... it's got too much potential to write off.

 
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