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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 2 replies, 3 voices, and was last updated 4 months, 2 weeks ago by Ryan Berhar.

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      Posts
      • #19907
        DeAnn R
        Keymaster

        Next week will be dose 9 for me! I’m considering it my Spinaversary because it’s the closest dose to the 2 year mark of starting Spinraza. Wow! I can hardly believe it. Even though the results aren’t dramatic I really can’t fathom where I’d be today having not been on it. This time I’m having same day labs, so that makes me nervous. Fingers crossed they’ll find a vein without too much difficulty. I’m also trying a new transportation company. Eek! Wish me luck!

      • #19908
        Kevin Schaefer
        Keymaster

        Good luck! Hope it’s less stressful for you than the last one!

      • #19910
        Ryan Berhar
        Participant

        Best of luck

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