In all honesty, I had no idea what SMA was. I knew about spinal muscular dystrophy, not specifics but in a general knowledge. For 20 years I knew nothing about SMA or that it existed.
April 21, 2011 my nephew was born. He slightly dehydrated and had an infection on his head. He was transferred to another hospital on the 23, and hadn’t even had the chance to come home yet.
May 6th, my mom told me my nephew may not live to see his first year. Then the very next day my sister told me that they were just giving him 8 months to live. That was when we found out about him having SMA.
My brother filled us in on what was going on with him that mother’s day.
May 31 was the first and last time I met my nephew. I got to tell him that I love him and it was one of the best moments of my life, to see him, but on the other hand seeing him just made me want to cry. He wasn’t feeling well that day.
June 18, 2011 my nephew passed away from complications of SMA. It was around 6 AM and my brother called to tell my mom who told the rest of us.
June 23, 2011 was his memorial service.
I’m writing this down from journals that I kept. In all honesty I can’t remember things that happened from the end of December until well after my nephew’s passing thanks to my own mental block. It’s funny how a year later, all I see now is stuff about SMA. From the news (with Avery’s bucket list) to here on tumblr (laughing at my nightmare and cherish each day a few others) it’s crazy. I would have thought that with the chances of a couple both being a carrier and then passing it on to their children there would be more of an uproar. Maybe there was and I just didn’t see it. All I know now is that we need to help try and find a treatment and a cure for SMA, along with other genetic disorders.
In the memory of my nephew Gabriel, and to all other’s who passed from SMA.