• Victoria posted an update 1 year ago

    I just want to inform everybody that our son passed away on the 13th… I want to personally thank everyone who has helped out with information and I would like to continue working and gathering up information.

    • Victoria, my heart goes out to you and your family. I can’t imagine what you’re going through, but know that we’re here to support you all anyway we can.

  • Victoria changed their profile picture 1 year ago

  • If you guys know of any websites I can go to and read about on that would be awesome to.  I am already a part of cure sma and they have been a huge help.

    • I’ll be researching this today, and I’ll try to get you some websites.

      • Hey Victoria, I’m Ryan, one of the other moderators. Thanks for joining us. Let me know if you have any questions.

  • Thank you both so much I really appreciate it alot.

  • I would like to raise better awareness and gain better knowledge of sma type 0. My son was born with sma type 0, and I have been trying to reach out/branch out to other families or caregivers to find out about there experience with type 0. I have learned alot about it but there aren’t many studies done on type 0. If you have any advice or…[Read more]

    • I posted some information in your last response that you sent nearly 3 hours ago. Here’s what I said:

      Victoria – My name is Michael Morale, and I’m the Forums and Multimedia Director for SMA News Today. Kevin Schaefer asked me to respond to your message regarding SMA type 0. To be honest with you, there’s not a lot of information on the Inter…[Read more]

  • Victoria posted a new activity comment 1 year ago

    And thank you guys so much. I really appreciate the help.

    • Victoria posted a new activity comment 1 year ago

      Thank you so much. I have been doig alot of research on sma and I have found very little on type 0. My son has had the first dose of spinraza but due to his respiratory issues i have discontinued the spinraza. I have recently heard about the Wisconsin sma protocol and I have done some research on it but its hard for me to understand all the…[Read more]

    • Victoria posted a new activity comment 1 year ago

      We are currently still in the Nicu right now. And yeah I have spoken to them but nobody seems to know much about type 0 and I have done alot of research on sma in all types but there is not much on type 0

        • Victoria – My name is Michael Morale, and I’m the Forums and Multimedia Director for SMA News Today. Kevin Schaefer asked me to respond to your message regarding SMA type 0. To be honest with you, there’s not a lot of information on the Internet regarding a Type 0 diagnosis. Both Kevin and I have SMA, and we are pretty much the authorities when it…[Read more]

      • Victoria posted a new activity comment 1 year ago

        Thank you, and I’m glad to join the sma news forums.. I do have a question; my son was born on January 9,2019 and he was diagnosed with sma type 0 and I was wondering if you happen to know anything about type 0. I have done alot of research and I have joined alot of groups but I have not found anybody with type 0.

          • Honestly, I don’t know much about types 0 or 4. They’re the two rarest types. Have you been able to consult with a neurologist?

        • Kevin Schaefer and Profile picture of VictoriaVictoria are now friends 1 year ago

        • Victoria became a registered member 1 year ago

          • Hey Victoria, welcome! I’m Kevin Schaefer, one of the forum moderators. Please let me know if you have any questions, and feel free to introduce yourself in the welcome forum. Thanks for joining us!

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