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.
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?
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.
Viewing 1 reply thread
You must be logged in to reply to this topic.
FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.