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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 1 reply, 2 voices, and was last updated 7 months, 4 weeks ago by Ryan Berhar.

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    • #20749
      DeAnn R
      Keymaster

      For the most part I’ve come to terms with my disability. I know my limitations, I do what I can and ask for assistance when necessary. Dwelling on what I can’t do isn’t beneficial. Despite that every once in a while I get reminded what I’ve lost over the years. It’s not even what I’ve lost that bothers me so much as that glimmer of possibility of doing those things again, then realizing it’s not going to happen. Not only is this the case when Spinraza came out, but more recently when I tried the Dynamic Arm Support. Dealing with disappointment isn’t easy, but I won’t let it keep me down.

      Going into it I knew Spinraza wasn’t going to allow me to walk. That ship has sailed. Even though I tried keeping my expectations low, a part of me was hopeful I’d regain some functions. My mind would wander and I’d imagine being able to pull my hair into a ponytail on a hot day. OK, I’ve never been able to do that, so maybe I’d be able to at least comb through the back of my hair? Well, that didn’t happen either. My benefits from Spinraza have been less than dramatic. Disappointing? Yes. Devastating? No. After reminding myself what the drug intends to do, stop or slow the progression, and what SMA is, a progressive disability, I can be satisfied with the minuscule gains I’ve had. I’m looking at Spinraza as biding my time until something better comes along.

      Hearing about the Dynamic Arm Support was exciting. You can check out Ryan’s video on the product here. I was sure it would enhance my life. After setting up a demo, again my mind wandered to those “what ifs” even though I tried not to get my hopes up. Of course I told my family about it. My niece said it would be too weird if I could raise my arm up. I imagined what it would be like giving her a high five after she rocked a pep band performance. Unfortunately, demo day was a bust. Although the device helped raise my arm, it actually inhibited my extension. We tried a couple things to no avail. With a smile on my face I thanked the gentleman for his time and for showing me the device even though my heart was broken.

      I won’t lie, I shed a few tears behind closed doors. Then I remembered crying creates mucus, and well, you know how great that is when you have SMA. So, I grab a tissue, balance it on the stick I use to reach my face and dry those tears. Tomorrow is another day. I intend to make it a good one.

    • #20832
      Ryan Berhar
      Participant

      Hang in there friend! God bless.

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