I wish August is SMA awareness month. This is our story. I wish almost daily that it was me. I wish the falls, the tears, the pain, the struggle could all be lifted from their tiny frail bodies. I wish I could take my perfectly healthy nerves and muscles, and transfer them into Emma and Ruby. I have the surgical ability, but it just wont work. You see nerves and the muscles they grow towards, are born in utero and form an intricate connection that science has yet to replicate. Not stem cell, nor prayer can replicate it at this point in human history. Not scalpel, not microsurgery, not hope. The medicines we all fund are mostly aimed at prevention of decline, but restoration is still a dream. The clock is ticking. We need medicine to help maintain my babies so their muscles wont waste away to nothing. They are fading daily and I cant stop that. I can wish for a trade all I want, but reality being what it is, I try to be able to see the path that is real and best. Right now that path is funding researchers that aim to stop the diseases march, not cure. We are so close. Yet the NIH has called SMA the most curable neurological disease. Its genes, and muscle agents, and needles in the spine. Its holding my baby while they hurt her to help her. Its tears and rewards and convincing her that we are doing this to help her. Its Emma saying I know that this is going to help me but right now I dont like it, through desperate tears while needles pierce her skin. Its daddy wishing it was me. Id take it all away if I could. So Ill run and raise awareness and funding to someday look back and know I did EVERYTHING I could. This disease takes everything from those it touches. It takes their muscles, and nerves, and dreams. But it leaves just enough to let us fight with what we have left. It changes every relationship you have. It turns date nights into emotional lettings. It makes birthdays times of reflection and fear. It makes family gatherings times that require thought about how to make sure the less able can be part of the crowd. It changes everything. Please help if you can. fsma.org/LWC/SteveCannady
Posted on: Sat, 23 Aug 2014 14:26:08 +0000
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