So we move forward. After receiving news that Ella has not qualified for the clinical trial we simply move forward. Each year, Families of Spinal Muscular Atrophy (FSMA) holds a conference that invites families with children suffering from SMA, the doctors who treat them, and the researchers who work tirelessly to find viable treatments and a cure for SMA.  It's an incredible experience to say the least.  We've attended one conference since Ella was diagnosed. During the short time we were there we found it to be one of the most special and enlightening experiences.  We found ourselves surrounded by families that are going through exactly the same things we are going through.  They understand, on a level that is elusive to most, the feelings and challenges we face as we journey through life with SMA.  The common ground that we share draws us closer to one another, nurtures friendships, and offers us unparalleled support.  The kids, too, walk...

I know what I say. I tell myself that there's a reason for everything.  I repeat in my mind that we must go forward. Now, however, my thoughts feel cold and my spirit erased. There's no other way to describe it. I know what I say...and I understand that this, too, shall pass. Yet for the moment, in the moment, a stifling numbness takes over.  A lack of control builds up inside.  A realization that while we're not any worse off, we're still looking for the light.   It seemed as though the light glimmered on our lives.  In a way, I suppose it did.  That twinkling of hope held an eternity of promises.  It mesmerized us; sang to us; brought us to it. Ella had an opportunity to be part of a clinical trial for an extremely promising medication that may hold a treatment for SMA.  The drug is called SMNRx and its function is to direct the back-up genes (that many people with SMA have) to produce full functioning SMN proteins (as currently the ...