The Current

Parents of disabled baby overcome expectation and adapt to new circumstances

At 8 weeks old, Cohen was diagnosed with the rare genetic disease spinal muscular atrophy. From fears of early death, to experimental drugs and new leases on life — his parents have come to learn how to appreciate what's within reach.
Nicole Kutchyera and her baby, Cohen (Nicole Kutchyera)

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The Current's season long project Adaptation features some of our audiences' personal stories in the face of life's unexpected events and hardships.  

We recently received an email from Nicole Kutchyera, who wanted to share her story.  

She writes:  

"At 8 weeks old my son Cohen was diagnosed with a rare genetic disease called Spinal Muscular Atrophy, type 1. SMA 1 is similar to ALS but with an infantile onset. 

At the time of diagnosis, doctors told my husband and I to brace for the worst .. that Cohen would lose the ability to move, swallow, and breathe. 

Kutchyera family

Shortly after his diagnosis, we found out about a brand new drug treatment that may be able to help.  Cohen started receiving this drug at Sick Kids at 3-months-old.

Now at 14-months-old he is healthy and doing well. 

Adaptation has been a key theme in our life over the past year, and will continue to be.  

We don't know what the future will look like for Cohen ... but we do know we will have to adapt to the life of a family with a child with a severe physical disability."

After receiving that email, we asked CBC's Cathy Alex, in Thunder Bay, to visit Nicole, her husband Colin, and their baby Cohen.

Listen to the documentary at the top of this post. 

This segment was produced by The Current's Lara O'Brien