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  • I Want To Help A Local Little Boy With SMA Receive ZolgenSMA…But How?

    Posted by survivinglife on July 30, 2019 at 9:28 am

    My mom sent me a link to a news article from our hometown about a 19 month old boy who is being denied ZolgenSMA by their insurance. I’ll link it here:
    It makes me so freaking mad and sad. Like I’ve pretty much accepted the fact that I will not be able to receive ZolgenSMA or Spinraza and I’m okay with that…mostly. But whenever I see little kids like Jackson getting denied treatment, it makes me wanna punch a wall – not that it’ll do anything to the wall. When I can’t punch the wall, I wanna cry.
    I wanna help him so bad. But I don’t know how. I mean, they set up a GoFundMe account but I can’t afford that. I wanna reach out to them and connect since they live in the same city as me…
    I kinda wanna start like some kind of bake sale or something like the ice bucket challenge for ALS but I don’t know what or how.
    Any advice, tips, or ideas?

    survivinglife replied 4 years, 10 months ago 4 Members · 4 Replies
  • 4 Replies
  • deann-r

    July 31, 2019 at 10:09 am

    Hey Crystal, I know it can be super frustrating seeing the need out there and not being able to do much about it. Especially now with treatments available. I myself can’t help financially, but I can encourage people to keep fighting. Meanwhile I try to inspire others to live their best lives despite adversity. It sounds like you’ve been doing that.

    Forgive me if you mentioned it before, why can’t you get Spinraza? Just curious if it’s a personal choice or if there’s roadblocks in the way.

  • kevin-schaefer

    July 31, 2019 at 10:26 am

    Hey Crystal, I actually saw on Facebook that this kid did end up getting approved. Took a few tries, but his Mom posted about it yesterday.

  • halsey-blocher

    August 2, 2019 at 9:43 pm

    Think it’s great that you want to help Crystal! Even if he has been approved now, you could still reach out to the family. Sometimes being a role model for families with young children with SMA is one of the biggest things you can do! And honestly, everyone needs to know that there are people thinking about them!

  • survivinglife

    August 4, 2019 at 5:17 pm

    Thank you guys! Yes, thankfully, he has been approved! I messaged his parents on FB and told them a little bit about my story with SMA and offered to answer any questions they have that only other SMA patients would be able to answer. His mom replied last night. She was very thankful I reached out and now so am I.
    I don’t qualify for Spinraza or Zolgensma. I’m not exactly sure why, but I think it has something to do with the surgery I had for my spine and something to do with my lungs as well.

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