November 21, 2012
by Mark Dunning
My son stinks. That’s not the point of this post, but really, he stinks. He smells like shower shoes. It’s self-inflicted. He doesn’t bathe. It’s an infectious stink, apparently, because he used it to raise $20,000 to help kids with hearing loss last year.
See, he wanted to raise money for the Decibels Foundation AND have a reason to wear the same shirt every day. So he came up with Stink Week. To ‘make a stink about hearing loss’ he planned to wear the same shirt for a week or until he reached his fundraising goal. The whole idea stinks so much that his entire class was convinced to join him. Together they raised $20,000 to help kids with hearing loss which, quite frankly, doesn’t stink at all.
Jack’s best friend is Thomas W. Thomas W. has an older brother who is also named Jack. That’s going to make this part confusing, but just understand that we’re talking about a pair of Jacks here. Jack W. participated in Stink Week last year and this year, not only is he participating, but he’s also working hard to recruit other kids to join Stink Week. His goal is to get his whole middle school to join in.
Recently Jack W. and my son Jack went to a Boy Scout meeting (neither is a Boy Scout) to ask the Boy Scouts to join in Stink Week. Jack W. talked passionately about how he wanted to help the little babies with hearing loss he had met the year before. This is a seventh grade boy on the cusp of puberty, right smack in the middle of the age when being the same, acting like everyone else, and not standing out in a crowd is often the most important thing. And yet there he was, in front of a room full of teenagers and young boys, standing with his little brother’s best friend, talking about helping babies. I couldn’t have been more proud of the kid. He was an inspiration. Jack W. is my hero.
Hold on while I switch gears for a second.
Jennifer Lentz of Louisiana State University joined our monthly researcher conference call earlier this week to talk about her research on Usher 1C (I’m surrounded by brilliant, nerdy Jennifers these days). I’ll sum it up very succinctly. She’s been able to inject newly born mice with Usher syndrome with a molecule that appears to rescue their hearing and vestibular function. Now, this is research and this is mice. We’re a LOOONG way from knowing if this will have any sort of efficacy in humans. Don’t start shooting yourself up with random molecules. It won’t help. But it got me thinking. What if my daughter Bella could have had normal hearing simply by receiving an injection shortly after birth?
Bella would not have had hearing loss.
My wife Julia and I would not have started the Decibels Foundation.
Our son Jack would never have been inspired to create Stink Week.
And Jack W. would never have been so touched by meeting babies with hearing loss that he would stand in front of a room full of Boy Scouts and passionately ask them for help.
So what WOULD happen with Jack W.? Was he just primed for a cause, any cause? Would he have embraced, say, global warming and urged the Boy Scouts to stink for a week not to make a stink about hearing loss but rather because it would save energy and reduce greenhouse emissions? Or would he have wandered along like most teenagers looking for a purpose? Would we have lost a year of Jack W. making the world a better place? Or a decade? Or would we have lost him forever, doomed him to a cubicle existence of contributing solely to the bottom line?
Lots of people have devoted time, effort and resources to making it plausible that we could live in a world without Usher syndrome at some point in the future. But I worry about the unintended consequences of our actions. By being involved in this effort, I have observed the great, moving kindnesses that can flow from human beings when they are inspired to support a cause. Frequent exposure to philanthropy makes the world a better place not just because problems are brought to light and addressed, but because people are at their best when they help others, rather than just helping themselves. We don’t want to rid the world of Usher syndrome and the inspirational kindness of kids like Jack W. at the same time.
I am thrilled to death by the research being done by Jennifer Lentz (and Jennifer Phillips and all the other Jennifers of the world). I know life will be better for people with Usher syndrome if we have treatments. I just don’t know if the world will be a better place without Usher syndrome.