What about Now?

August marks SMA awareness month and families light candles, wear ribbons and post about how we are going to fight for the cure.  When Riley was first diagnosed I wanted to shout it out from the roof tops! I wanted everyone to know what SMA was and how terrible this disease is and how it's going to rob my son of a full life.  As the years have passed I have found my passion for this fight to begin to fade.  I can't help but keep asking what about today?  What are we doing to help these kids now, for what they need today.  After a day of fighting for equipment, education, transportation, nursing care and finding enough sleep to do it all over again the next day I just don't have it in me to stand for the CURE.  It just seems that their is a different CURE that needs to be found.  A CURE that Riley gets what he needs when he needs it.  I commend those of you that still have the energy to find a cure for this disease.  It is going to be because of you that it will be found.  But in the mean time where is the CURE for what Riley needs today to get him through this disease? Is anyone else out there wanting to fight for a different CURE?