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Saturday, August 23, 2014

Why Ice?

I realize that this is a widely debated topic and will certainly never come to a place of resolution in which 100% of the population is on board.  However, I also know that many articles are circulating that give one side of the debate, and I would like to share another.  I have learned, in my 32 years, that unless you have actually experienced something yourself, you cannot say with certainty how you would approach any situation.  Having said that, I would like to discuss the topic of the ALS ice bucket challenge, as I see it based on my own experiences.

Facebook has been inundated with videos of people of all ages pouring buckets of ice water over their heads, making monetary donations, and most importantly, raising awareness for a devastating illness.  The response has been overwhelming.  Even the nay-sayers, who criticize performing the challenge are raising more awareness by complaining about what's being done.  All of this attention only further educates the public about something that was widely misunderstood only a few short weeks ago.  However, one particular article that has repeatedly shown up in my own newsfeed, disturbs me greatly.  It discusses the need to decline the challenge/donation because of the use of embryonic stem cell research.

I'm not ignorant to the fact that the reason for this debate is rooted in its seemingly opposing position with religious practices.  This is why the discussion will never be settled.  There will always be opposing views on when a human becomes a human, or when it inherits a soul, etc.  I'm not here to change anyone's mind.  I'm not naive enough to think that I'm even capable of doing so.  I simply wish to give another side of the story.

As previously stated, it seems only logical that one's own personal experiences would shape their opinions on any number of topics.  Someone could assume that they would fall into a certain category and then after living through one of life's many trials, may decide that the original idea no longer applies.  So, it makes sense to me that anyone who has not experienced a debilitating illness within their family, would draw the conclusion that something like embryonic stem cell research is not only unnecessary, but wrong.  However, ALS is not the only genetic disease that devastates entire families for generations. There is a whole world of people living with, coping with, and dying from diseases that most have never considered.

Most of the disabilities and disorders that we see frequently in the media are ones that have the potential for a positive outcome.  Many people endure countless clinic visits, medications, and therapies throughout their lives to combat one form of disorder or another.  But so many of them do so in the hopes of PROGRESSING.  I challenge you to consider what you might do in a case in which your loved one was diagnosed with something that not only couldn't be cured, but would actually mean that you got a front row seat to watching a slow decline.  Some of these include Alpers-Huttenlocher syndrome, Tay Sachs, Dravet Syndrome, LGS, and Rasmussens.  And the reason I can name these is because I have experienced one of them and feared the others on my road to diagnosis.

Tay-Sachs disease, for example, is often diagnosed in babies after having completely normal pregnancies and deliveries.  One mother describes going to an office to have her son's eyes checked, thinking he'd need glasses, and sitting across from a doctor who informed her that her son actually had this disease.  Can you imagine the shock?  You're sitting there, contemplating the idea of your poor baby having to wear glasses at  such a young age, how much they'll cost, etc., only to find out that he's actually dying. Dravet syndrome involves seizures that progressively  get worse, until eventually the child loses nearly all function and ultimately dies. Rasmussen's is also a seizure disorder in which the eventual treatment, used to buy just a little more time before inevitable death, is to remove half of the person's brain.  Diseases such as these are just a death sentence.  No medication.  No treatment.  No trials.  You're just done.  And not quickly.  No.  You watch as the body of the child you created slowly takes your baby away, piece by piece.  It's no longer the name of a disease.  That doesn't define your child.  What defines them is that silly way they scrunch their nose when they know they're being ornery.  What defines them is that no matter how many times you've read Mr. Brown Can Moo, they'll beg you to do it again.  What defines them is the sweet smell of their baby breath on your cheek as you rock them to sleep.

I'm not being melodramatic.  This is real. This happens.  Every day.  So, am I in favor of a type of research that could save these helpless children/parents/families from having to watch this slow decline?  Not just yes, but Hell yes.  I understand that it may be seen as trading a life for a life.  I don't happen to believe that, but honestly, that isn't even relevant at this point.  These types of disorders and diseases happen, at times, without warning.  I had four children.  My first three have absolutely no signs of any kind of illness, and certainly not anything as devastating as these.  Where was my red flag?  I did what many decide to do.  I had one more child.  Maybe you have 2, or 3, or 4 right now.  Maybe they're healthy.  If so, it makes sense that you would assume that any subsequent children would also have the same fate.  And it even makes sense that you might think that God had something to do with that.  But, if we're giving Him/Her/It credit for anything, I choose to thank God/Allah/Mother Natures/And my lucky stars, that there are educated people out there willing to perform life-changing research.

So, why ice? Why ALS?  Because my hands can grip things.  Because my arms can reach above my head.  Because after I've been doused, I can run away on legs that haven't betrayed me.  And because I can type these words for those who can't.

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