The Eternal Thread: TET's More Like It!

[The Serbian Empire]

greetings from my tired state, please end me

Don't fall asleep in Toledo. There's tornadoes nearby. Complete destruction possible.

[Yumyumsuppertime]

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.

[The Serbian Empire]

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.

That's kind of a scary condition.

[Gurori]

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?

[Ethel mermania]

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.

Congratulations to all three of you, having a handicapped child is a difficult but can be an incredibly rewarding experice. Your daughter is lucky to have both of you. I hope she has many many more years of happy birthdays to come.

Bless you all.

[Stattr]

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.

Awwwwwww

[Yumyumsuppertime]

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?

SMARD1, or Spinal Muscular Atrophy with Respiratory Distress 1.

[Stattr]

I'm so happy for you, that's wonderful to hear.

Out of curiosity, what is the condition?

SMARD1, or Spinal Muscular Atrophy with Respiratory Distress 1.

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 Serbian Empire]

I'm so happy for you, that's wonderful to hear.

Out of curiosity, what is the condition?

SMARD1, or Spinal Muscular Atrophy with Respiratory Distress 1.

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.

[Greater Orensta]

greetings from my tired state, please end me

Don't fall asleep in Toledo. There's tornadoes nearby. Complete destruction possible.

But i live in north carolina, if i fall asleep i'll be yelled at for where i piss

[The Serbian Empire]

Don't fall asleep in Toledo. There's tornadoes nearby. Complete destruction possible.

But i live in north carolina, if i fall asleep i'll be yelled at for where i piss

Which might suck even more than complete destruction.

[Yumyumsuppertime]

SMARD1, or Spinal Muscular Atrophy with Respiratory Distress 1.

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.

[Galloism]

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.

You know, you all have strength I will never have.

[Soldati Senza Confini]

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.

Congratulations to all of you.

[Yumyumsuppertime]

SMARD1, or Spinal Muscular Atrophy with Respiratory Distress 1.

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.

[United Empire of Humanity]

greetings from my tired state, please end me

Don't fall asleep in Toledo. There's tornadoes nearby. Complete destruction possible.

Don't say that. I live there.

[Soldati Senza Confini]

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.

Are there any adults with SMARD1?

[Italios]

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.

A huge congratulations to you and your family. May your daughter have many birthdays ahead of her.

[Yumyumsuppertime]

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?

We know of someone in their twenties. However, considering how quickly we caught this and managed to intervene with various types of physical therapy, there's no telling how long she may live. Things could go south tomorrow if she gets an infection, or she could conceivably live as long as any vent patient.

[The Serbian Empire]

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.

Wow, this is interesting.

[Stattr]

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.

infections? Skin conditions?

[The Serbian Empire]

Don't fall asleep in Toledo. There's tornadoes nearby. Complete destruction possible.

Don't say that. I live there.

I can't stop tornadoes. Only alert that they're coming!

[United Empire of Humanity]

Good to hear your daughter is living another day, Yumyum. Thank the everything.

[Greater Orensta]

But i live in north carolina, if i fall asleep i'll be yelled at for where i piss

Which might suck even more than complete destruction.

I'd rather live somewhere where my house isn't at risk of being destroyed

[The Serbian Empire]

Which might suck even more than complete destruction.

I'd rather live somewhere where my house isn't at risk of being destroyed

There is no place which is entirely free of natural disasters.