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.
