Greater Orensta wrote:greetings from my tired state, please end me
Don't fall asleep in Toledo. There's tornadoes nearby. Complete destruction possible.
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by The Serbian Empire » Wed Aug 24, 2016 4:21 pm
Greater Orensta wrote:greetings from my tired state, please end me
by Yumyumsuppertime » Wed Aug 24, 2016 4:25 pm
by The Serbian Empire » Wed Aug 24, 2016 4:27 pm
Yumyumsuppertime wrote:My daughter turns three today. Because it's usually not detected in time, children with her condition usually don't last three months, much less three years. Her birthdays aren't just markers on the road; they're victory celebrations, and it's all due to my wife, who was able to see that something was seriously wrong, and got her to the hospital ASAP when she was just a couple of weeks old.
I'm constantly amazed by both of them.
by Gurori » Wed Aug 24, 2016 4:27 pm
Yumyumsuppertime wrote:My daughter turns three today. Because it's usually not detected in time, children with her condition usually don't last three months, much less three years. Her birthdays aren't just markers on the road; they're victory celebrations, and it's all due to my wife, who was able to see that something was seriously wrong, and got her to the hospital ASAP when she was just a couple of weeks old.
I'm constantly amazed by both of them.
by Ethel mermania » Wed Aug 24, 2016 4:29 pm
Yumyumsuppertime wrote:My daughter turns three today. Because it's usually not detected in time, children with her condition usually don't last three months, much less three years. Her birthdays aren't just markers on the road; they're victory celebrations, and it's all due to my wife, who was able to see that something was seriously wrong, and got her to the hospital ASAP when she was just a couple of weeks old.
I'm constantly amazed by both of them.
by Stattr » Wed Aug 24, 2016 4:37 pm
Yumyumsuppertime wrote:My daughter turns three today. Because it's usually not detected in time, children with her condition usually don't last three months, much less three years. Her birthdays aren't just markers on the road; they're victory celebrations, and it's all due to my wife, who was able to see that something was seriously wrong, and got her to the hospital ASAP when she was just a couple of weeks old.
I'm constantly amazed by both of them.
Pasong Tirad wrote:Heresy. The earth is flat. It's evening everywhere. Stattr needs to be guillotined.
Hlad:And after that?
Ethel: She is moving in with you, you will equip a throne room for her, and bring her rose petals everyday. You shall dress in a french maid's outfit, and only speak english with a bad french accent.
by Yumyumsuppertime » Wed Aug 24, 2016 4:37 pm
Gurori wrote:Yumyumsuppertime wrote:My daughter turns three today. Because it's usually not detected in time, children with her condition usually don't last three months, much less three years. Her birthdays aren't just markers on the road; they're victory celebrations, and it's all due to my wife, who was able to see that something was seriously wrong, and got her to the hospital ASAP when she was just a couple of weeks old.
I'm constantly amazed by both of them.
I'm so happy for you, that's wonderful to hear.
Out of curiosity, what is the condition?
by Stattr » Wed Aug 24, 2016 4:45 pm
Pasong Tirad wrote:Heresy. The earth is flat. It's evening everywhere. Stattr needs to be guillotined.
Hlad:And after that?
Ethel: She is moving in with you, you will equip a throne room for her, and bring her rose petals everyday. You shall dress in a french maid's outfit, and only speak english with a bad french accent.
by The Serbian Empire » Wed Aug 24, 2016 4:45 pm
by Greater Orensta » Wed Aug 24, 2016 4:49 pm
by The Serbian Empire » Wed Aug 24, 2016 4:56 pm
by Yumyumsuppertime » Wed Aug 24, 2016 4:58 pm
The Serbian Empire wrote:
An extremely rare condition at that with only 60 or so cases reported throughout history. Few make it this long and either are dependent on ventilators or lack signs of diaphragmatic paralysis. Either way, I consider each day as a victory.
by Galloism » Wed Aug 24, 2016 4:59 pm
Yumyumsuppertime wrote:The Serbian Empire wrote:An extremely rare condition at that with only 60 or so cases reported throughout history. Few make it this long and either are dependent on ventilators or lack signs of diaphragmatic paralysis. Either way, I consider each day as a victory.
Yeah, she's trached, on a vent, has a g-tube, and has limited movement in her arms with none at all in her legs. The doctor told us, though, that there are about 200 cases out there right now. It's even enough for a Facebook group that we belong to.
by Soldati Senza Confini » Wed Aug 24, 2016 5:00 pm
Yumyumsuppertime wrote:My daughter turns three today. Because it's usually not detected in time, children with her condition usually don't last three months, much less three years. Her birthdays aren't just markers on the road; they're victory celebrations, and it's all due to my wife, who was able to see that something was seriously wrong, and got her to the hospital ASAP when she was just a couple of weeks old.
I'm constantly amazed by both of them.
Tekania wrote:Welcome to NSG, where informed opinions get to bump-heads with ignorant ideology under the pretense of an equal footing.
by Yumyumsuppertime » Wed Aug 24, 2016 5:00 pm
by United Empire of Humanity » Wed Aug 24, 2016 5:01 pm
SAS is like 1/3 self hating Americans self flagellating for attention from le enlightened Europeans, 1/3 people who just like to make fun of the ridiculous shit some Americans say, while the other 1/3 are /r/latestagecapitalism tier hatred of the US. You can't even praise America for defeating imperial Japan without someone crying about muh nukes.
Bullshit
by Soldati Senza Confini » Wed Aug 24, 2016 5:03 pm
Yumyumsuppertime wrote:The Serbian Empire wrote:An extremely rare condition at that with only 60 or so cases reported throughout history. Few make it this long and either are dependent on ventilators or lack signs of diaphragmatic paralysis. Either way, I consider each day as a victory.
Yeah, she's trached, on a vent, has a g-tube, and has limited movement in her arms with none at all in her legs. The doctor told us, though, that there are about 200 cases out there right now. It's even enough for a Facebook group that we belong to.
Tekania wrote:Welcome to NSG, where informed opinions get to bump-heads with ignorant ideology under the pretense of an equal footing.
by Italios » Wed Aug 24, 2016 5:05 pm
Yumyumsuppertime wrote:My daughter turns three today. Because it's usually not detected in time, children with her condition usually don't last three months, much less three years. Her birthdays aren't just markers on the road; they're victory celebrations, and it's all due to my wife, who was able to see that something was seriously wrong, and got her to the hospital ASAP when she was just a couple of weeks old.
I'm constantly amazed by both of them.
by Yumyumsuppertime » Wed Aug 24, 2016 5:10 pm
Soldati Senza Confini wrote:Yumyumsuppertime wrote:
Yeah, she's trached, on a vent, has a g-tube, and has limited movement in her arms with none at all in her legs. The doctor told us, though, that there are about 200 cases out there right now. It's even enough for a Facebook group that we belong to.
Are there any adults with SMARD1?
by The Serbian Empire » Wed Aug 24, 2016 5:15 pm
Yumyumsuppertime wrote:The Serbian Empire wrote:An extremely rare condition at that with only 60 or so cases reported throughout history. Few make it this long and either are dependent on ventilators or lack signs of diaphragmatic paralysis. Either way, I consider each day as a victory.
Yeah, she's trached, on a vent, has a g-tube, and has limited movement in her arms with none at all in her legs. The doctor told us, though, that there are about 200 cases out there right now. It's even enough for a Facebook group that we belong to.
by Stattr » Wed Aug 24, 2016 5:18 pm
Yumyumsuppertime wrote:Stattr wrote:Wow, heard of all of them, never heard of a case before. It's fascinating and i'm praying that she lives to see more with her life and you and your wife see this strong child grow.
The condition was identified such a short time ago, and there are so few cases known to have lived past a few months, that doctors haven't been able to give us any sort of prognosis regarding how long she's going to live. Her greatest risk doesn't come from the condition itself, but rather issues that can develop when someone has been on a vent for their entire life.
Pasong Tirad wrote:Heresy. The earth is flat. It's evening everywhere. Stattr needs to be guillotined.
Hlad:And after that?
Ethel: She is moving in with you, you will equip a throne room for her, and bring her rose petals everyday. You shall dress in a french maid's outfit, and only speak english with a bad french accent.
by The Serbian Empire » Wed Aug 24, 2016 5:19 pm
by United Empire of Humanity » Wed Aug 24, 2016 5:19 pm
SAS is like 1/3 self hating Americans self flagellating for attention from le enlightened Europeans, 1/3 people who just like to make fun of the ridiculous shit some Americans say, while the other 1/3 are /r/latestagecapitalism tier hatred of the US. You can't even praise America for defeating imperial Japan without someone crying about muh nukes.
Bullshit
by Greater Orensta » Wed Aug 24, 2016 5:19 pm
by The Serbian Empire » Wed Aug 24, 2016 5:21 pm
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