Every day I get an email that alerts me to any news or blog posts about SMA... Today I got one that made me cry and broke my heart even more. It was so hard to lose Eli, but this family lost a set of twins one day apart. I can't imagine having to feel the pain I'm feeling times two. My heart breaks for them so much. I wish I knew something that would make it easier, but I know nothing can.
It is so strange how nobody has even heard of SMA until someone they know has a child diagnosed with it. It doesn't seem to be a "rare" disorder at all. I meet new people online almost every day now who have either lost a child, had a child diagnosed, or have a milder form themselves. It is so sad that a disease that can kill our children before they even get that first birthday cake to play in is so unknown.
If you haven't signed the petition yet, please do so. You are already online...just go do it. PLEASE.