Friday, May 6, 2016

Noah & the Arc of Hope

The nicest thing about being not smart, at least relatively speaking, is that I consistently marvel at all that I do not know.  Unfortunately, not all of the revelations reveal knowledge of good things. Occasionally the knowledge I acquire is of something that makes me a little sad.  Far more often it is of something that enrages me - wholly and completely pisses me off.

Take for instance, Cystic Fibrosis.  CF is a disease that causes thick, sticky mucus in the body.  The mucus is produced due to a protein contained in the body's cells that simply does not function properly.  As a result of this malfunction, lung infections occur, which infections eventually lead to a person experiencing progressive, permanent lung damage.  For good measure (because attacking a person's lungs is not enough for one disease I suppose) it also affects a person's pancreas and liver and, after time, a host of other organs in the body.  A person afflicted with CF loses 2% of his or her lung function annually.  It is a disease for which there is no cure.  Rather, it is treated medically with medications whose goal is to check and to slow its progression.  Presently, a majority of patients afflicted with CF will need to undergo a double lung transplant in order to stop the disease's progression.  A double lung transplant.  It is not exactly the Triple Lindy of surgeries but it sure as hell is no cannonball either. 

As angry as a disease such as CF makes me, what really, really chaps my ass is the fact that there is no Federal funding for CF research.  None.  Zero dollars.  Why?  Apparently, because CF is classified as an "orphan disease", which affects "only" an estimated thirty thousand Americans.  Thus, the laboring oar in the effort to raise the funds necessary to finance the medical research needed to develop the medicines that may be able to stop CF is manned by the families of the people battling the disease.  

I have had the pleasure and privilege of knowing Noah Merlino's dad, Christian, for a decade or so.  Once upon a lifetime ago, he and I were adversaries in a case.  At some point thereafter, he joined the Firm as a lawyer and slightly more than one year ago, he became one of my Partners.  Christian is a hell of a guy - the kind of guy who gives lawyers and the practice of law a good name.  He and his wife, Kristen, are two of the folks manning the laboring oars of which I spoke in the preceding paragraph. 

Noah is ten years old.  He really digs doing a lot of stuff that all of us - presuming we had a bit of sense - enjoyed doing when we were ten.  He plays baseball, he rides his bike, and he hangs out with his mom, his dad, and his little sister, Julia.  And he is among the toughest little dudes whose acquaintance you shall ever make.  For while he is a wonderfully polite and gregarious little boy, he is also a fighter.  For present purposes, the only opponent on his dance card is CF.  

If there was justice in the world, children would not get stricken with lousy diseases such as CF.  But they do.  Once you recognize that fact, you can do one of two things about it.  You and hang your head and sulk about it.  You can roll up your sleeves and do something about it.  The Merlino family has chosen the latter - and then some.  

Tomorrow, Kristen, Christian, Julia, and Noah shall participate in their annual Fundraiser - the Lehigh Valley Great Strides Walk for CF.  Their aptly-named team is Noah's Hope.  Christian and Kristen spend every day of every year fighting the good fight for their little boy.  What they do is nothing short of extraordinary.  Tomorrow is the one day all year on which they ask for help...     

...because forty-plus years after the question was first asked, the dope remains that there is still hope.  



-AK 


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