• Posted by kevin-schaefer on June 20, 2018 at 9:00 am

    I just got back from the 2018 Cure SMA conference, and there was one topic that was brought up there that even I don’t think about much.

    We talk a lot about people with SMA and parents of people with SMA, but I think we often forget about parents who have SMA. Granted, I have written some interviews with people in this demographic, but I still think we can do better in this area. In particular, it’s important to think about kids who have parents with SMA and how that affects them.

    My friends Melissa and Brad are both parents who have SMA. Melissa is a single Mom with one daughter, and Brad has a wife and two kids. Melissa brought up at one point during the conference that she’s trying to find a support system for her daughter. I have another friend Collin, who’s type 3, and he and his wife have one daughter.

    I just wanted to start a general discussion about this topic. There’s no doubt a stigma about people with disabilities and our ability to become parents. At the conference, our adult group joked with each other about getting asked if we’re capable of dating, having sex, having kids, etc. The ignorance of some people is pretty astounding, and hilariously entertaining.

    I just wanted to open the floor here for questions and experiences related to being a parent when you have SMA. For those of you who are parents with SMA, what are some of the biggest challenges and/or rewards? What is it like raising a kid when you have a disability? What are some of the challenges your child faces? If you have SMA and you want to be a parent, what questions do you have for those who are? I’ve attached links below to interviews I’ve done with several parents who have SMA.




    Adults with SMA: Brent Dixon

    kevin-schaefer replied 5 years, 11 months ago 1 Member · 0 Replies
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