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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 4 replies, 5 voices, and was last updated 5 months ago by Rachel Markley.

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      • #19264
        DeAnn R
        Keymaster

        In case you’ve missed it, I’ve been doing perspective pieces that are included with our Flash Briefings a couple times a month. I’ve included my most recent one below. This is just my perspective, so I’d love your thoughts on this subject as well.

        Recently a cousin of mine was passing through town, so reached out to see if my Mom and I could do lunch. Spur of the moment activities aren’t really my thing since I can’t really change my outfit and have to rearrange my schedule, but this was a rare occasion so of course I joined in. One topic that came up, probably because my cousin just turned 40 and I will be 40 in just a few months, was my life expectancy. Mom made the comment that doctors told her I probably wouldn’t live beyond 3 years old. Surprisingly I hadn’t heard this before.

        It breaks my heart knowing other families have gotten news like this when their child was newly diagnosed with SMA. At the moment this number can fluctuate with type and severity. As far as I’m concerned it can fluctuate right out the window. I know when parents get hit with this news they want to know everything possible about this diagnosis. My hope is that parents somehow disregard that number and just be a supportive family like any other. My younger brother who was also affected with SMA passed away at 4 ½ years old. I’m 39 and my sister who does not have SMA is 43. Children should be cherished no matter how long they’re with us.

        Another thing to consider with life expectancy are the new treatments available. Obviously both Spinraza and Zolgensma will make a huge difference, but they are relatively new and there’s no real long-term data showing what effect they’ll have on life expectancy. Plus there’s been so many advancements in other support technology as well. When I was a kid there was no such thing as a cough assist machine. With all those variables it would be really difficult determining a number.

        At times throughout my life I’ve been curious as to what my life expectancy would be (since I never recall hearing it was 3.) Google was of no help in figuring it out. So I’ve just decided to celebrate every birthday with pride. When I turned 30 I threw myself a big birthday party. Partly because, hey I made it to 30, and partly because I have a type A personality and wanted control over the details. At that age I think a lot of people might start shying away from admitting their age. Not me, after some of the things I’ve gone through in my life I’m shouting my age from the rooftops. Okay, not really, but I am planning my 40th birthday bash. Hopefully it’ll be epic!

      • #19266
        Kelly Miller
        Participant

        Like you Deann, my parents were also given an age by which I was supposed to die. Mine was 5 yrs. old. I will be 56 this coming Sep, and I get mistaken all the time for 30-something. I have been extremely blessed & fortunate to not yet need a BiPAP or vent in spite of some very horrific bouts with pneumonias. I use a cough assist now whenever I do get sick and make sure I stay away from others who may be catching something. I have led a very productive and enjoyable life to this point, and I plan on living much longer to do many more exciting things.

        These life expectancy numbers are no more than a wild stab in the dark when it comes to SMA type II. Parents of newly diagnosed kids need to treat their children as if they are going to live as long as any other child. Yes, you have to take precautions, and some kids may need special medical attention, but none of that means they can lead the lives that have always been envisioned for them and by them. Reach for the stars and enjoy your kiddos; teach them that anything can be accomplished if you’re willing to think outside the box!

      • #19284
        Ryan Berhar
        Participant

        I believe it was four years for me. I’m 23 now, so those predictions mean very little to me. I’m still here, and I’ll be here as long as God wants me here. That’s always been my perspective.

      • #19286
        Halsey Blocher
        Participant

        My parents were told three as well. I can’t imagine what that must have felt like for them. God apparently had other plans and I’m now 21. Like you, I plan to always count each year as a blessing.

      • #19723
        Rachel Markley
        Participant

        My parents were told 2 and I am 28! I DESPISE these life expectancies!

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