Thursday, May 16, 2013

Processing ....

Complacency.  It happens to the best of us. We get so comfortable in a situation that we stop trying, stop looking for better ways, stop worrying.  Until ...

Funding.  It's the hot topic of conversation in government lately.  What can be cut?  Where can spending be limited.  How can we afford the luxuries we've all become accustomed to?  Money is always at the back of people's minds.  Money is the root of all evil.

We have become complacent in our search for helping L.  We've become comfortable in believing the money would always be there.  Her doctors would always be there to hand out her medicine and the FDA would come along and approve the new meds she's been on for the last year.  The same medications that have helped her and so many affected by Fragile X Syndrome. 

Never in a million years did we think the rug would be pulled out from under us with five little words, "we don't have the money". 

I have been sitting on the verge of tears, a few of which have escaped my eyes, thinking of the impact this will have on our lives, on so many people's lives.  I'm sad.  I'm scared.  I'm feeling the need to scream and cry and write to people to fix this. 

A year ago, L began a journey in the field of medicine that would improve her life more than I could have hoped.  She became a little girl that wanted to take on the world.  Her verbal skills sky-rocketed.  She started making friends and talking and playing with her classmates.  She started asking questions about things around her, questions that made sense.  A question no longer went unanswered or met with quizzical, empty eyes.  Stories began emerging of successes and attempts at things never imaginable. 

I heard people - family, friends, acquaintances, teachers, aides - raving about the improvements seen in a short amount of time.  I watched as L and her sister became friends who played together, who taught each other things, who helped each other and shared with each other, and read to each other.  Two sisters.  Best friends.

All of this may change, and change dramatically, all because of money.  The production of the medicine that L's been taking is coming to an abrupt halt.  The company doing the trial is discontinuing the project due to funding.  They don't have the resources available anymore. 

In my head, I picture young men going from playful classmates and sons to aggressive children in stuck in men's bodies, hitting and biting the people who are trying to help them the most.  I picture once calm and entertaining classrooms being overwhelmed with meltdowns, yelling, crying and jumping up and down.  I envision parents trying in vain to get their children to sleep, to eat, to get dressed on their own.  When the children are told "I love you", in response I hear . . . silence.

I fear for these families.  I am nervous for my baby girls, one of whom will be thrown back into the world of sensory overload and lack of understanding, one of whom, I'm afraid, will lose the sister she's come to know over the last year.

I'd like to think none of this will happen, that these advances the individuals have made will not regress.  I'd love to envision the funding miraculously materialize and this is all just a big "haha. Oops, sorry for scarin' ya".  But, I won't hold my breath.

I've been complacent too long, and all I've accomplished in this is to get blind-sided.  It's time to act.  While STX209 may not be saved (but we can all hope), raising awareness will get us somewhere and will get us heard.

Get your pens out and start writing.  Ready?


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