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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, 1 voice, and was last updated 3 months, 1 week ago by Alyssa Silva.

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    • #22376
      DeAnn R
      Keymaster

      Let’s welcome Katie Napiwocki back into the rotation of SMA News Today columnists! I not only enjoy her writing style, I can relate to what she has to say. Such as in her latest column “Peering Through the Fog of Fear.” Oftentimes I question if Spinraza is worth it. Similarly my post loading dose progress has slumped to near baseline. However I don’t have any of the negative side effects, and I still feel the benefits for me outweigh the cons. I respect Katie’s decision. As her article points out it wasn’t an easy conclusion to come to. For her this decision allows her to dictate her life, not SMA. Can you relate?

    • #22407
      Alyssa Silva
      Keymaster

      I LOVE Katie’s style of writing, and this column was no different. I’m so glad she’s back. Although I can’t relate to her experiences with Spinraza, the part where she talks about needing a break from writing about SMA in the beginning… I feel that. It’s exhausting at times.

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