So long ago and far away...
Well only about 1 year and 4 months ago I heard the word SMARD... an acronym for Spinal Muscular Atrophy with Respiratory Distress. Pretty much the worst words in the world. I remember sitting next to Makenzie in that hospital bed. I cant remember what she was doing... Either sleeping or watching TV. I didn't like to be distracted by other things when she was awake so she was probably sleeping. But I remember typing in those acronyms... only about 3 pages worth on google. I wrote out the whole title and again no more than 4-5 pages. I couldn't understand anything. All the information was foreign. I remember thinking that I should have gone to med. school. Maybe then I would know what my daughter was dieing of. I came across only 2 blogs. I was already in contact with 1 and I then reached out to the other. The information is so limited. It is all so very rare. I asked the doctors for more info and they had nothing to provide me with other than the little they knew.
I keep up to date on SMARD. At least I try to. I google the word several times a month. I go through all the same articles. I try to understand more and more. I don't know what I'm looking for. There is no answer as to why Makenzie died. At least not one that I will be okay with. I was looking on there again today. I dont know when this happened but I just noticed how many google pages there are on SMARD....
107,000!
So maybe a lot are not what SMARD really is, or has weird information, or is really for SMA, or is some for a cult..
But still- look how much it has grown in 1 year and 4 months!
I thought that was kind of cool.
To have more people know of this. To have more people read the facts. To have more support.
So maybe one day... There will be a cure. Or a special treatment. So that others don't have to suffer like Makenzie.
3 comments :
I am also amazed by the pace that medical discovery and awareness happens, but it still also seems really slow sometimes. I don't have a name to type in yet, so I type in symptoms and look for anything that might fit and try to see if we can rule it out or if it is maybe the answer. I also hope that there is more understanding of medical conditions that can help other families and children.
i never even heard of it til i found your page off kellie staats its crazy what your daughter had to suffer from its so sad and i hope one day they come up with a soultion
I googled this too when I first came across your story and was saddened at how little information was out there, especially for those (like me and, obviously, you) who want to know as much about it as they can. I'm glad there is getting to be more out there and hoping the amount of info increases as researchers learn more about it so that others can have information not available now.
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