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.
More often than not when I talk with someone over the phone or online my disability doesn’t come up. If I need to disclose it I will, but otherwise I don’t find it’s pertinent to the conversation. In Halsey’s recent column she talks about her volunteer work at Turnstone. I like her decision making process when it comes to sharing she has SMA. What determines your decision to reveal your disability? Are there any instances where you wish you had or hadn’t disclosed it?
Thank DeAnn! We’re disappointed to have to cancel it after everyone worked so hard on it, but we’re making the most of the situation with the online auction we put together over the weekend. And I still loved getting to be a part of it all!
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