SMA News Today Forums | victoria | Activity https://smanewstoday.com/forums/members/proudmommy09/activity/ Activity feed for victoria. Wed, 08 Apr 2026 03:24:42 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 f09e886c4d57f233fc5506b955df3d2a victoria posted an update: I just want to inform everybody that our son passed away […] https://smanewstoday.com/forums/activity/p/4983/ Sat, 16 Feb 2019 21:46:47 -0600 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.

]]> 1 bdcd428d39f7d994ffc7233e2d2baadf Victoria changed their profile picture https://smanewstoday.com/forums/activity/p/4890/ Wed, 13 Feb 2019 12:26:34 -0600 0 aff143ab39cb6f6a069a9211410453db victoria replied to the discussion Raising awareness of sma type 0 in the forum Raising Awareness of SMA https://smanewstoday.com/forums/forums/topic/raising-awareness-of-sma-type-0/#post-17065 Wed, 06 Feb 2019 18:36:44 -0600 Reply to Raising awareness of sma type 0

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.

]]> 6120ff2d2f1811c864477c2841416f57 victoria replied to the discussion Raising awareness of sma type 0 in the forum Raising Awareness of SMA https://smanewstoday.com/forums/forums/topic/raising-awareness-of-sma-type-0/#post-17064 Wed, 06 Feb 2019 18:32:27 -0600 Reply to Raising awareness of sma type 0

Thank you both so much I really appreciate it alot.

]]> 3b7606be853f697b4baf9780230aa86d victoria started the discussion Raising awareness of sma type 0 in the forum Raising Awareness of SMA https://smanewstoday.com/forums/forums/topic/raising-awareness-of-sma-type-0/ Wed, 06 Feb 2019 18:25:23 -0600 Raising awareness of sma type 0

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… Read more

]]> 4407c8a8b43bf72fc0db8eaa69f12cf1 Victoria posted a new activity comment https://smanewstoday.com/forums/activity/p/4768/ Wed, 06 Feb 2019 17:57:32 -0600 And thank you guys so much. I really appreciate the help.

    ]]>     1     9faaa12bdcb6ee9057dd565f28f99fec Victoria posted a new activity comment https://smanewstoday.com/forums/activity/p/4767/ Wed, 06 Feb 2019 17:52:06 -0600 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… Read more

    ]]>     1     dfcbc10720f7008daa72a06c3aacc694 Victoria posted a new activity comment https://smanewstoday.com/forums/activity/p/4762/ Wed, 06 Feb 2019 15:37:36 -0600 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

      ]]>       1       2b400012d2d73273826228ca1761b34e Victoria posted a new activity comment https://smanewstoday.com/forums/activity/p/4760/ Wed, 06 Feb 2019 15:04:11 -0600 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.

        ]]>         1         572e1c0514b001f4cb226a47149102f6 victoria became a registered member https://smanewstoday.com/forums/activity/p/4745/ Tue, 05 Feb 2019 16:23:00 -0600 1