top of page

My Unsung Hero

One of my favorite podcasts is Hidden Brain. I find it so fascinating, and there is so much to love – social science, human behavior examined, and a host whose voice I could listen to for days. Creator and host Shankar Vedantam always ends the episode by naming an unsung hero, a person who helped with that particular episode or a person who generally supports the podcast. I always look forward to this short segment at the end, because it is infused with joy and gratitude.

Recently, Vedantam started a new podcast called My Unsung Hero in which he invites others to share the story of someone who made a difference in their life. The podcast’s website explains, “Each episode reveals what the news ignores: everyday acts of kindness and courage that transformed someone’s life.” Episodes are only 5-10 minutes long, but they remind me of the goodness and kindness of people. They are such a bright spot.

As I listen each week, I think about my own unsung heroes. The people who have made a difference in my life through small and seemingly insignificant acts, often without even knowing the profound effect they had on me. Throughout our family’s journey with SELENON related myopathy, countless doctors, nurses, therapists, medical professionals, friends, organizations, and family members have provided us support, encouragement, and strength. But there is one person in particular that I can confidently say changed the trajectory of our journey and our life.

Our older son was sent to physical therapy at 6 months to treat what the doctors thought was a simple case of torticollis. After months of PT, I was not convinced that torticollis was the only thing going on with my baby. We revisited the Craniofacial Specialist who had ordered the PT, and he told me to give it more time. Surely, he reasoned, Peter would grow out of it.

So we soldiered on with PT for many more months and still it seemed that little progress was being made to strengthen and stretch his neck muscles. One day we had an appointment with a physical therapist that we didn’t often see. I don’t remember her name, but she was the first person to say, “I think you are right. I’d like to connect you with my friend who is an orthopedic surgeon.”

We did go see her friend (he is still our orthopedic surgeon today!) who then referred us to a neurologist.

He ordered x-rays, tests, and ultimately a muscle biopsy that led us to a clinical diagnosis for our son.

The clinical diagnosis led us to a research study at Boston Children’s that eventually led to the genetic diagnosis that both of our sons share.

This led us to Cure CMD and other families affected by SELENON related myopathy and other subtypes of Congenital Muscular Dystrophy.

This community led us to ask more questions of their doctors and specialists which resulted in better care and treatment for our boys.

In hindsight, that one moment of acknowledgement started us on a path to true understanding of our sons’ disease. I often wonder what would have happened if that physical therapist had not paused to understand my concern and offer a solution.

Soon after that appointment, she left the PT clinic and we never saw her again. I’ve never been able to thank her for the consequential effect she had on our family and on the well being of our boys. How she literally changed, and maybe even saved, our lives with her small act. I am forever grateful.

The best I can do to honor her kindness is show my gratitude to others who support us and to keep my eyes open to the needs of others.


bottom of page