There's facts.
There's statistics.
There information.
Then, there's more.
SMA Awareness Month has been a wonderful influx of facts, statistics and information. All seeking to raise awareness, increase knowledge, and hopefully shed light about SMA to a part of the human population that has never heard of the disease. Ultimately, the pursuit for a treatment and/or cure lies at the root of it all.
I woke early this morning with Ella, as per usual. She's somewhat of a "slow waker" and likes to sit for a few minutes holding hands, "charging", or just being silent in the morning light. Today we went through our morning ritual and my day started.
When I logged onto Facebook I read that a young child with SMA had passed away. The child had contracted an infection and within a week had multiple-organ failure. The child now rests peacefully as the parents try to somehow come to grips with it all.
SMA. It weakens a body to the point of a cold or a simple infection becoming a life threatening situation.
SMA. It tears at the fabric of life since its target is the young, the vulnerable, the innocent.
SMA. It forces families to hold dearly to hope; steadfast to change; all the while armoring themselves with a cloak of strength to carry on despite the pain each day brings.
One-third of the way through SMA Awareness Month and all of the statistics, all of the facts, all of the information seems secondary right now. I've spent the better part of my day thinking about the young child who so quickly lost life to SMA. I've thought of the parents and how they must be feeling having lost their child. I've thought of what it really means to care for someone who is terminally ill. I've thought about SMA and its agenda.
One-third of the way through SMA Awareness Month and I realize that what drives us all is a desire to survive. Our mechanisms of achieving survival come in as many forms as there are people; yet the common thread of self-preservation and preservation of those we care for spins its way through us all. Many times the thread reaches to those we have never met. From these extended threads comes the miracle we so desperately long for...the continued miracle of people coming together to once and for all find treatments and/or a cure for the disease that imprisons our children and takes them from us much to early.
As I was putting together the facts, statistics, and information for ELLAwareness For SMA to share with our corner of the world this month...I noticed that four stats/facts always stood out for me:
- 1 in 6,000 live births affected (approximately)
- 1 in 40 are carriers (approximately)
- #1 genetic killer of young children
- #1 neurological disease (of about 600) closest to treatment and/or a cure (according to NIH)
Of course there is more that one can say about SMA...how it occurs, the quality of life it leaves, prognosis, etc. The four preceding facts however seem to say so much to me...especially the last two:
- #1 genetic killer of young children
- #1 neurological disease (of about 600) closest to treatment and/or a cure
How can we not find a cure for this disease?
The young child I read about this morning, along with the many other children who have died from SMA, brings an ache to my heart for all who suffer from SMA and their families.
The young child I read about this morning, along with the many other children who have died from SMA, shows us that a statistic, fact, or a piece of information is only part of what is really going on here.
The young child I read about this morning, along with the many other children who have died from SMA, are (in my humble opinion) the most powerful, albeit heartbreaking, awareness we can have for this disease.
If you read this post before the evening August 11, 2012 please light a candle at dusk (on the evening of 8.11.12) for all those who have passed from SMA; for all those who suffer daily from SMA; for all those who care for those affected by SMA.
If you read this post after August 11, 2012 please ponder deeply what it means to survive and think about how far your thread spins into the lives of others. Reach into your own soul, your own being, and ask yourself...
How can we stop the #1 genetic killer of young children...?
