August is SMA Awareness Month.
What does it mean to be "made aware"? How does one tell another of a life-threatening condition? Where does one begin?
Spinal Muscular Atrophy is nothing short of a devastating disease that has been named the #1 genetic killer of children less than two years of age. Remarkably it has also been named the one neurological disease of over 600 that is closest to a cure (NIH, NINDS).
Closest to a cure. Those words ring chimes of hope in the hearts and minds of each and every family that has lived, is living, and will live a life with SMA.
Researchers work tirelessly, putting to use their extraordinary intellects, unequivocal talents, and sheer compassion for those they are trying to help as they reach deep into their chosen fields making SMA the #1 neurological disease closest to a cure.
Doctors and therapists, from a variety of disciplines, show genuine compassion while working with people who have SMA. They teach and learn, they offer a kind of help available nowhere else. Forming meaningful relationships with families while fulfilling their role as physician, therapist, or medical assistant.
Organizations exist that otherwise people might not know about. From financial assistance to family support, these organizations generously provide without hesitation. The people behind the organizations love what they are doing and it shows each and every time they interact with families.
Families directly affected by SMA network via Facebook, Twitter, YouTube, e-mail, and a plethora of other social networking avenues. They help one another, encourage each other, celebrate the triumphs, and cry at the defeats. When a person passes away due to SMA, child or adult, the community mourns with an emotion that personalizes the death. Whether we knew the person or not...sadness unlike any other enters. Being touched by such a devastating disease runs deep into the psyche, deep into the emotional tank we all have. We look to those words again in our hearts and mind...closest to a cure.
Family and friends learn of the disease through those that live with it. They react in a variety of ways; in the way they know best. Unbeknownst to them they provide more than just support. They provide a place for us to continue to live a happy, healthy life despite a terminal illness staring us right in the face. The value of a friendship or family member is the blessing that provides us with a place to rest our hearts and heads.
Those directly affected by SMA, the kids and adults who have this disease, are truly what brings about the awareness. The strength, resilience, bravery and fortitude echoed through the years by every person afflicted with SMA is a miracle in and of itself. The debilitating disease is relentless. It can work through the body quickly or slowly, or a combination of both over a period of years. It present challenges that many people wouldn't even think about...challenges in being able to do the simplest of tasks or any task at all. And while the body slowly atrophies, the mind is sharp as can be. A person afflicted with this disease, each and every one of them, is brilliant. Their minds are a beautiful miracle; their souls are more so.
Yes, 1 in 40 of us are carriers of the recessive gene responsible for SMA.
Yes, 1 in 6,000 live births are affected.
Yes, SMA is the #1 genetic killer of children under two years old.
Yes, the National Institute of Health (NIH) named SMA the #1 neurological disease closest to a cure.
Yes, SMA is considered a terminal disease.
Yes, the facts are there.
As August comes to us, we step back to look at the life we have. We are thankful for the moments that grace us. We are in awe of those who fight for us, with us. We step back and know that the awareness we may spread could, in some way, help those stricken with Spinal Muscular Atrophy.
On August 10, 2013 please join in the candle lighting event. Light a candle for those who have lost their lives to SMA and for those who are still fighting for their own life.
Please share.
