By Meredith McKay
This is Matthew, he will soon turn two and he is living with Spinal Muscular Atrophy (SMA). Spinal Muscular Atrophy is the number one genetic killer of children under the age of two and is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control and even swallowing.
Matthew is the son of my very close friends Courtney and Paul, whose strength and courage I greatly admire.
Matthew enjoying Sesame Street Live.
I have wanted to write about Matthew, his family and SMA for a while but I did not know how to begin, if the family would want me to, and how to even explain this awful yet common disease.
Recently, Courtney had begun asking her Facebook friends for prayers for another local family dealing with the SMA diagnosis of their infant son, Coby. Like many hundreds of others, I have been reading his mom Lori’s daily updates on her Facebook page. Because of this awful disease, Courtney and Lori have become friends and support one another as only parents of children with SMA can.
When I looked at Lori’s page last night to check on baby Coby’s day she had posted a column written by Nancy Taylor about Coby. I asked Nancy for permission to reprint her column for my blog on Merrimack Valley Moms – she quickly obliged adding, “anything to spread awareness for this disease!”
By Nancy Taylor
A column I wrote for Coby ♥
It will be in Thursday’s edition of the Billerica Minuteman with his photo.
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 Quinn Kulis
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.
Lori and Dave Kulis holding their Superman Coby
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.
Lori and Coby snuggling
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. ♥
There is an upcoming local fundraiser, “Shamrocks for SMA.” All proceeds from the event to benefit families of Spinal Muscular Atrophy.
Please join us for some pre-St. Patrick’s Day cheer for a great cause.
“Shamrocks for SMA”
Friday , March 4th.
7:00 PM – 2:00 AM
Claddaugh Pub, Lawrence, MA
Spinal Muscular Atrophy (SMA) is the number one genetic killer of children under the age of two. However, there is hope for these children. The National Institute of Health recently deemed SMA as one of the closest terminal diseases to be cured. But SMA needs funding, research and continued resources to achieve this once impossible goal.
Here is how you …can help!
On Friday, March 4, we will be raising funds and awareness for SMA at The Claddaugh Pub in Lawrence, MA. The night will include live entertainment, prizes and fun. Nationally recognized Irish band, Inchicore will open the evening and we will cap things off with local fan favorite Corduroy.
Tickets are being sold for $10/each but any size donation would be very appreciated.
All proceeds from the event to benefit Families of Spinal Muscular Atrophy. FSMA is a a non-profit, 501(c)3 tax exempt organization. Federal ID# 36-3320440.
We hope to see you all on the 4th!