Refined By Fire — Ryan Berhar

Third in a series. Read parts one and two. In the following interview, I’ll explore how SMA impacts the way people perceive me, as well as share valuable advice for families with a loved one…

Second in a series. Read part one.  This week, I sought advice from my aunt, Heidi McLaughlin, because she is a thoughtful, wise person. Like me, she is a writer. RB: If I…

I go to my family and friends for advice before anyone else. They’ve always given me tremendous input, but how is that affected by SMA, if at all? In the following interview, the first in a series, I’ll…

As a kid with SMA, I had numerous ongoing hardships that caused me a great deal of stress. Most 7-year-olds don’t have to deal with the prospect of a spinal fusion surgery or with the…

I try to be thankful every day, but at Thanksgiving, I try extra hard. A couple years ago, my grandma had our entire family write things we were thankful for on plastic pumpkins. While my cousins…

For a couple of years now, I’ve been working to achieve a positive wave of change in my life. My ultimate goals are to provide for myself financially and move into my own home. In other words,…

A couple times now I’ve touched on my surgery that didn’t happen at a hospital in Portland, Oregon. It’s an experience that was highly relevant to life with SMA and the therapy Spinraza, so…

For most of my life, summer was my favorite season. I’ve never been a fan of school or frigid temperatures, both of which are absent during the summer. Once I graduated from high school, however, summer…

For most of the year, I’m chilled to the bone. While most people are comfortable at 60 degrees Fahrenheit, exposure to such a temperature for half an hour results in loss of hand function until I…

In the past two years, I’ve held seemingly every possible position on Spinraza (nusinersen). I went from elation in knowing that a treatment for SMA existed to being so fed up with the process that I…

After I graduated high school, I had zero ideas of what I would do from there. The paths that young adults typically take were not workable for me. I couldn’t simply move into…

In my last column, “Meticulous or Ridiculous?”, I mentioned that I was traveling to Eugene for the Oregon football home opener. It’s a trip I’m used to because I’ve made it seven years in a…