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.
Great points in your column, Kevin. I actually linked it in mine that will be published on Friday.
To me, Rare Disease Day means taking the opportunity to have our voices amplified on the importance of educating others about rare diseases. It means celebrating the qualities that make us rare. And, it means honoring the community that makes us feel less alone in our rarities. Other than writing about it— here and on social media— I don’t participate in any events or anything like that.
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FDA Approves ZOLGENSMA for SMA! Talk about it now — click below:
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