This
was one of the hardest, most important columns I have ever written and it is
dedicated to a little boy that I have never met. I first laid eyes on Coby Quinn
Kulis when a friend posted a link about his story on Facebook. Coby is five
months old and suffers from Spinal Muscular Atrophy (SMA), a progressive genetic
motor neuron disease involving the nerves and muscles. The body does not produce
a particular protein, which enables the motor neurons in the spinal cord to
survive. It is the leading genetic killer of infants and toddlers and statistics
show that this disease affects one in every six-thousand births. There are four
different types of SMA, type 1 being the most lethal in children under the age
of two. Coby has type 1. Often times muscle weakness is evident at birth and
diagnosis usually occurs within the first three months. Coby came home with
hospice care before he was three months old, and his prognosis gives him very
little time. The symptoms of the disease are gut wrenching. They include
difficulty swallowing, trouble breathing, and often times result in the
insertion of a feeding tube. In pictures, Coby looks like an average little
baby, and that is one of the most difficult parts of the illness. Often times
SMA patients are observed to be bright and sociable and their intellectual
activity is normal. I wanted to write this to raise awareness of this horrible
disease, and to share with you a little boy who at only five months old may be
too young to speak, yet has spoken to so many. Lori and Dave are Coby's parents.
They are going through something that nobody should ever have to go through, and
they are doing it with amazing strength and grace. He is their first and only
child. The world of technology has allowed us to follow their journey through
this dreadful disease, and by doing so, you cannot help but be captivated by
this little boy and his family. Through Facebook Lori keep's us updated on
Coby's day-to-day condition. She shares the good days and the bad. She shares
his restful nights. She shares his struggles to feed. She shares pictures when
he is peacefully sleeping on his daddy's chest and there is truly nothing more
beautiful. So many of us have come to feel a connection with this family.
Everyday when I wake up, I check on my little buddy. I want to see how his night
was. I want to know how they are doing. I want to make sure he is still ok. Coby
will get his wings soon. That is the unavoidable and harsh reality of this
disease. I want this family to know that while none of us could ever really know
what it has been like living through something like this, we join you in your
mission to raise awareness. In Coby's short time here, he has taught so many of
us, perfect strangers even to hug tighter and love harder and for that we are
eternally grateful. Coby’s parents have nicknamed their little fighter Superman
and it suits him perfectly. Every night Lori plays the lullaby “Godspeed” by the
Dixie Chicks for Coby. A line from the song says “My love will fly to you each
night on angel’s wings.” To say it is a moving song, is an understatement. To
find any positive in all of this sadness researchers in The International
Scientific community agree that of all neuromuscular diseases SMA is the closest
to developing a treatment or a cure. If only we could freeze time for precious
little Coby. Thank you Lori and Dave for sharing your precious little gift all
in the name of finding a cure. God Bless you all, and Godspeed little man. ♥ N.Taylor