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    • #26583
      Brianna Albers
      Keymaster

      Balancing our innate need for independence with the realities of SMA isn’t easy, but I believe it’s worth it. In my latest video for Genentech and SMA My Way, I talk independence in my own life. Let me know what you think!

    • #26604
      Tracy Odell
      Participant

      Thanks so much for that Brianna. I fought very fiercely for independence since I grew up in the hospital for kids with physical disabilities. Although I need help with most of my activities of daily living, I was independent if I had choice and control over who was helping me and how they were helping me. That manifested itself in the new, at the time,  attendant services.

      Because of the introduction of attendant services in the community, I was able to leave the institution and live in the apartment by myself or with others and get the help intermittently throughout the day that I needed. From there, I was able to go to university, begin working and dating. I met my husband to be, and we had two children together. I retired a couple of years ago. Our children are now grown and in their 30s. We have one granddaughter who is turning 14 and another grandchild on the way.

      The constant throughout everything was the ongoing availability of attendant services that I was able to control and direct. My parents would not have been able to help me, my husband probably would have buckled under the pressure of raising the kids and looking after me, and I know my mental health would have taken a deep dive.

      I turned 63 this year, and I am aware that this is a very long lifespan for someone with SMA 2. I have been very lucky at key junctures my life. I never resisted solutions to help me be more comfortable and independent such as using a motoring wheelchair once I was in high school and most recently accepting the need for a catheter.

      With new medical treatments, the next generation of kids born with SMA will have another form of luck. I hope they realize, however, that their life could be very different and that they will help fight for services needed for other people who must live with their disabilities.

      • #26635
        Brianna Albers
        Keymaster

        Thank you so much for sharing, Tracy! That’s incredible. I’m considering moving out of my parents’ place so your story gives me such hope.

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