This month is SMA awareness month. You haven't heard of it? Well now you have. Spinal Muscular Atrophy. My cute nephew has it, he began showing symptoms in the later part of his first year of life. He will be three years old next month.
We did a candle lighting this month.
As an odd side note to this video, I am just realizing that Macey was wondering if it was going to blow up-explode and I probably Totally freaked her out by saying it was, indeed, going to blow up. Awesome.
I blogstole this right off of my sister's blog:
The National Institute of Health has said that SMA is the neurological disease closest to a cure. And, the cure for SMA could help further the progress of treatments and cures in other diseases, such as ALS and DMD.
SMA has three types. Type 1 is the most severe, with children often not living more than a few years. Type 2 and type 3 are progressively less severe. What was once considered adult-onset SMA is now being classified as type 4.
Type 1 SMA a.k.a. Werdnig- Hoffmann disease is the number one genetic killer of children under the age of 2.
SMA is autosomal recessive meaning both parents must carry the gene for a child to have SMA. It is fairly common to be a carrier for this disease. 1 in 40 is a carrier. It is estimated to affect 1 in 6,000-10,000 births.
SMA is progressive. Once there is an onset of symptoms, there is typically a steep decline in strength with an eventual plateau.
SMA affects all muscles in the body, usually manifesting in the legs and core first. The hardest part of SMA to me is the part that is unseen. It's the loss of strength in the intercostal muscles. The muscles that I never knew existed. They are the muscles in between your ribs that help you breathe and cough. This weakness is what causes so many deaths in children so young.
We love you Benson.
Thanks for showing us how to
Be Strong.
1 comment:
You're so sweet to post this. We love you guys too! And the video was super cute.
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