victoria
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victoria posted an update 6 years 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.
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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.
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Victoria changed their profile picture 6 years ago
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victoria replied to the discussion Raising awareness of sma type 0 in the forum Raising Awareness of SMA 6 years ago
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.
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victoria replied to the discussion Raising awareness of sma type 0 in the forum Raising Awareness of SMA 6 years ago
Reply to Raising awareness of sma type 0
Thank you both so much I really appreciate it alot.
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victoria started the discussion Raising awareness of sma type 0 in the forum Raising Awareness of SMA 6 years ago
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
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Victoria posted a new activity comment 6 years ago
And thank you guys so much. I really appreciate the help.
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Absolutely! We’re happy to help as much as we can.
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Victoria posted a new activity comment 6 years 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… Read more
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Victoria posted a new activity comment 6 years 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
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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… Read more
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Victoria posted a new activity comment 6 years 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.
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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?
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kevin-schaefer and
victoria are now connected 6 years ago - Load More
