Crowdsourcing rare lung disease Options

[thekohser]

I found something this morning that is nearly a year old, but I'd never seen it before. Thought I'd share...

Then Wales clears his throat and says, “I have never told this before, but there is something else deeply personal that impacted me. My daughter Kira, suffered from a rare condition from birth that would have eventually killed her. She was a newborn baby with very rare lung incapacity with no known cure. A certain doctor in San Diego had found an untested cure that seemed to work on at least some children. But its outcome was not conclusively proven. So, parents who took their children had to make a call. The procedure required the child to be paralysed for a few moments and it was repeated a number of times before the child’s lungs began to function normally again.

Left with no other options, we agreed to give it a try. We watched as four times she was turned upside down, her entire system stopped and the lungs cleaned. At the end of it, she breathed and, thank God, has become perfectly normal.”

He stops.
A teardrop.
Silence.

He wipes it off and begins haltingly.
“At the end of the procedure, I realized how precious the doctor’s knowledge was. It occurred to me that no one other than this doctor would ever know about this whole thing. There had to be a way”. And that is how Wikipedia came about. First as Nupedia, that went nowhere. For three years, it struggled with the concept of a free, Internet-based encyclopedia with expert review of content, before Wales turned the idea on its head, leaving the choice of editing content to anyone who was willing to.

Any idea what lung condition Kira suffered from, and (pray tell) what sort of condition could be cured by tipping someone upside-down and "paralyzing" them so that their lungs can drain? Milton, this sounds like a job for you!

Also, it looks like Jimmy isn't universally beloved in India the way we're led to believe:

Bharati:
Aug 7, 2009
Nice story but knowing the kind of scam guy Jimbo is makes it hard for me to accept anything he says as truth. People should read Jimmy Wales own wikipedia entry before giving this shyster even 1 paisa.

[Emperor]

Wonderful story if true. Something that cool would probably wind up an a medical journal.

[Eva Destruction]

Any idea what lung condition Kira suffered from, and (pray tell) what sort of condition could be cured by tipping someone upside-down and "paralyzing" them so that their lungs can drain? Milton, this sounds like a job for you!

Without knowing the details, I assume this is the procedure referred to. Looks to be a genuine experimental procedure to me, and the timings (initial paper on the results published in 2007) match up.

[thekohser]

Any idea what lung condition Kira suffered from, and (pray tell) what sort of condition could be cured by tipping someone upside-down and "paralyzing" them so that their lungs can drain? Milton, this sounds like a job for you!

Without knowing the details, I assume this is the procedure referred to. Looks to be a genuine experimental procedure to me, and the timings (initial paper on the results published in 2007) match up.

Okay, Step 2 then is to determine how Wikipedia has handled this information. If, after all, the inspirational vision behind such an encyclopedia was to preserve such knowledge, it should be clearly documented in Wikipedia, right?

Here's something scientific on Wikipedia about "Temporary paralysis of the diaphragm".

[thekohser]

Could be we're looking for info about "CDH" or "congenital diaphragmatic eventration". Its treatment is discussed as such on Wikipedia.

[GlassBeadGame]

This actually might be a very important piece of historical record. It also deserves a long hard look to assess the veracity of the claim. Certainly much more important the the frequency of a professors' editing patterns as disclosed to a student. It also, because it involves the health concerns of a child, requires a good deal of discretion and care in its handling.

First it seems to me completely believable that his daughter suffered the condition and received the treatment. Even if the "reason for founding" Wikipedia is a falsehood it is not in the nature of lies or liars to make such things up out of whole cloth. So lets focus on the "reason for founding Wikipedia" part of the matter.

Mr.Wales is known to have criticized his wife for pursuing a career as nurse. It seems that such an altruistic endeavor offended his Randian sensibilities. I learned of this from Greg if I recall correctly. What do we know about when this occurred? If it was after his daughters treatment it would be an argument against the sincerity of his claim. Why value doctors at the same time you debase nurses? Has Mr. Wales ever changed his mind concerning his public support for Randian beliefs or apologized to his wife for his criticism?

Does this version of events appear in any other interview in which Wales discusses the founding of Wikipedia? This is the first I've heard of this but others are better Sole Flounder watchers than I am. A parent might reasonably want to avoid bringing his daughter into a public discussion but even so if he omitted it from other accounts why would it be included in this one and not the others?

What about statements concern this source of motivation that he might have made contemporaneous with the beginning of Nupedia and Wikipedia? If he was then articulating this as his motivation, even in private, it would clear him from concerns of recent fabrication. If not it is more reason to doubt. We are fortunate to have someone around this forum, Larry Sanger, who was also around at the inception of (and co-founded) these projects. Perhaps Larry could share what he knows about statement Mr. Wales made or didn't make at that time?

If this version of Mr. Wales motivation for the creation of Wikipedia is true it would answer some otherwise very hard to understand questions about why Mr.Wales suddenly and uncharacteristically felt the need to "benefit mankind." If it is not true it would reflect very negatively on his motivation as well as his character and reinforce the view of Wikipedia as a kind of scam. This is the kind of question ultimately best left to serious biographers or divorce lawyers.

[Milton Roe]

I found something this morning that is nearly a year old, but I'd never seen it before. Thought I'd share...

Then Wales clears his throat and says, “I have never told this before, but there is something else deeply personal that impacted me. My daughter Kira, suffered from a rare condition from birth that would have eventually killed her. She was a newborn baby with very rare lung incapacity with no known cure. A certain doctor in San Diego had found an untested cure that seemed to work on at least some children. But its outcome was not conclusively proven. So, parents who took their children had to make a call. The procedure required the child to be paralysed for a few moments and it was repeated a number of times before the child’s lungs began to function normally again.

Left with no other options, we agreed to give it a try. We watched as four times she was turned upside down, her entire system stopped and the lungs cleaned. At the end of it, she breathed and, thank God, has become perfectly normal.”

Any idea what lung condition Kira suffered from, and (pray tell) what sort of condition could be cured by tipping someone upside-down and "paralyzing" them so that their lungs can drain? Milton, this sounds like a job for you!

The "lung cleaning" sounds like Pulmonary alveolar proteinosis. A child could conceivably be turned upside down and paralyzed for the lavage. Although they generally do only one lung at a time (for obvious reasons-- you tend to literally drown otherwise).

Usually this is a life-long condition, though, in classic form. Perhaps Kira was born with some surfactant buildup that was treatable a one-time thing, and responded to a series of one-lung lavages. That might fit with this being really-really rare.

[Alison]

The "lung cleaning" sounds like Pulmonary alveolar proteinosis. A child could conceivably be turned upside down and paralyzed for the lavage. Although they generally do only one lung at a time (for obvious reasons-- you tend to literally drown otherwise).

Usually this is a life-long condition, though, in classic form. Perhaps Kira was born with some surfactant buildup that was treatable a one-time thing, and responded to a series of one-lung lavages. That might fit with this being really-really rare.

Sounds horrible either way. I just feel sorry for his daughter (IMG:smilys0b23ax56/default/unhappy.gif)

[Moulton]

I just feel sorry for his daughter (IMG:smilys0b23ax56/default/unhappy.gif)

So do I, but for entirely different reasons.

[Milton Roe]

I just feel sorry for his daughter (IMG:smilys0b23ax56/default/unhappy.gif)

So do I, but for entirely different reasons.

Say, I wonder if any nurses were involved in the child's treatment? (IMG:smilys0b23ax56/default/smile.gif) Nurses having gone into pediatrics for entirely or partly altruistic reasons... (IMG:smilys0b23ax56/default/biggrin.gif)

When it's Jimmy's child and her care, strangely, it may well be that the same rules do not apply as for other people's children. (IMG:smilys0b23ax56/default/ohmy.gif) I am shocked if that is true.

[thekohser]

Mr.Wales is known to have criticized his wife for pursuing a career as nurse. It seems that such an altruistic endeavor offended his Randian sensibilities. I learned of this from Greg if I recall correctly. What do we know about when this occurred? If it was after his daughters treatment it would be an argument against the sincerity of his claim. Why value doctors at the same time you debase nurses? Has Mr. Wales ever changed his mind concerning his public support for Randian beliefs or apologized to his wife for his criticism?

Does this version of events appear in any other interview in which Wales discusses the founding of Wikipedia? This is the first I've heard of this but others are better Sole Flounder watchers than I am. A parent might reasonably want to avoid bringing his daughter into a public discussion but even so if he omitted it from other accounts why would it be included in this one and not the others?

What about statements concern this source of motivation that he might have made contemporaneous with the beginning of Nupedia and Wikipedia? If he was then articulating this as his motivation, even in private, it would clear him from concerns of recent fabrication. If not it is more reason to doubt.

Wales comments to his wife about nursing are documented, and it was his FIRST wife Pam, not the mother of Kira Wales.

Here's the thing -- wasn't Nupedia launched about 10 or 11 years ago? How old is Kira? I thought she was about 9 or 10. Seems odd that her infant health could have spawned the idea for something that already existed.

(IMG:smilys0b23ax56/default/wacko.gif)

[Eva Destruction]

Here's the thing -- wasn't Nupedia launched about 10 or 11 years ago? How old is Kira? I thought she was about 9 or 10. Seems odd that her infant health could have spawned the idea for something that already existed.

(IMG:smilys0b23ax56/default/wacko.gif)

If he was in San Diego, it would have been between 1998 and 2001; the dates do tally.

As GBG says, whatever one thinks of Wales I see no reason why he would lie about this.

[GlassBeadGame]

Mr.Wales is known to have criticized his wife for pursuing a career as nurse. It seems that such an altruistic endeavor offended his Randian sensibilities. I learned of this from Greg if I recall correctly. What do we know about when this occurred? If it was after his daughters treatment it would be an argument against the sincerity of his claim. Why value doctors at the same time you debase nurses? Has Mr. Wales ever changed his mind concerning his public support for Randian beliefs or apologized to his wife for his criticism?

Does this version of events appear in any other interview in which Wales discusses the founding of Wikipedia? This is the first I've heard of this but others are better Sole Flounder watchers than I am. A parent might reasonably want to avoid bringing his daughter into a public discussion but even so if he omitted it from other accounts why would it be included in this one and not the others?

What about statements concern this source of motivation that he might have made contemporaneous with the beginning of Nupedia and Wikipedia? If he was then articulating this as his motivation, even in private, it would clear him from concerns of recent fabrication. If not it is more reason to doubt.

Wales comments to his wife about nursing are documented, and it was his FIRST wife Pam, not the mother of Kira Wales.

Here's the thing -- wasn't Nupedia launched about 10 or 11 years ago? How old is Kira? I thought she was about 9 or 10. Seems odd that her infant health could have spawned the idea for something that already existed.

(IMG:smilys0b23ax56/default/wacko.gif)

Well that would be more or less dispositive. Things that follow cannot cause things that preceded absent some string theory stuff that Milton will probably fill us in on. But you would need a good start date for Nupedia and DOB for Kira. I hate to open the door on collecting information on the girl...web 2.0 can take that in some bad places.

[John Limey]

Here's the thing -- wasn't Nupedia launched about 10 or 11 years ago? How old is Kira? I thought she was about 9 or 10. Seems odd that her infant health could have spawned the idea for something that already existed.

(IMG:smilys0b23ax56/default/wacko.gif)

If he was in San Diego, it would have been between 1998 and 2001; the dates do tally.

As GBG says, whatever one thinks of Wales I see no reason why he would lie about this.

First of all, Wales was led into what he said. The reporter asked him "Tell us something deeply personal that helped you shape your world view, that has made Wikipedia what it is". He was fishing for a personal story. Second, the crucial link between the moment and Wikipedia is made by the reporter; he's the one who wrote "And that is how Wikipedia came about". Third, the next sentence "For three years, [Nupedia] struggled with the concept of a free, Internet-based encyclopedia with expert review of content, before Wales turned the idea on its head, leaving the choice of editing content to anyone who was willing to" is demonstrably false.

In sum, then, what I see is a reporter who wanted to tell the story of how some personal tragedy or triumph inspired Wikipedia and spun what he got into just that, even it involved stretching at the truth. This story of a sick daughter is moving and makes Wales sounds like a good guy, but it hasn't become a part of his standard spiel, which I think tends to confirm that it had a minimal impact which was exaggerated by this reporter.

[GlassBeadGame]

Here's the thing -- wasn't Nupedia launched about 10 or 11 years ago? How old is Kira? I thought she was about 9 or 10. Seems odd that her infant health could have spawned the idea for something that already existed.

(IMG:smilys0b23ax56/default/wacko.gif)

If he was in San Diego, it would have been between 1998 and 2001; the dates do tally.

As GBG says, whatever one thinks of Wales I see no reason why he would lie about this.

First of all, Wales was led into what he said. The reporter asked him "Tell us something deeply personal that helped you shape your world view, that has made Wikipedia what it is". He was fishing for a personal story. Second, the crucial link between the moment and Wikipedia is made by the reporter; he's the one who wrote "And that is how Wikipedia came about". Third, the next sentence "For three years, [Nupedia] struggled with the concept of a free, Internet-based encyclopedia with expert review of content, before Wales turned the idea on its head, leaving the choice of editing content to anyone who was willing to" is demonstrably false.

In sum, then, what I see is a reporter who wanted to tell the story of how some personal tragedy or triumph inspired Wikipedia and spun what he got into just that, even it involved stretching at the truth. This story of a sick daughter is moving and makes Wales sounds like a good guy, but it hasn't become a part of his standard spiel, which I think tends to confirm that it had a minimal impact which was exaggerated by this reporter.

If the event it did not motivate Wales, that might mitigate the wrong, especially if he would come forward and correct the record. But it hardly lets him off the hook. He could have passed on the opportunity (assuming the story about his motivation is false which is not at all clear to me) to use his daughter hardship to fill in a narrative.

[John Limey]

But you would need a good start date for Nupedia and DOB for Kira. I hate to open the door on collecting information on the girl...web 2.0 can take that in some bad places.

If this is accurate, then it appears Kira Wales was born circa January 2002, which would invalidate the story.

According to Nicholas Carr, however, Kira Wales was born December 26, 2000.

According to this, which is almost certainly accurate, Kira Wales was 8 in May/June 2009 and 7 3/4 years old in in December 2008. That would put her birthday somewhere in early 2001.

Going by any of these three figures, Kira Wales was clearly not born at the time of the Nupedia launch in March 2000.

Edit: Going by the most reliable figure, she also was not born in time for the Wikipedia launch.

This post has been edited by John Limey:

[thekohser]

According to Nicholas Carr, however, Kira Wales was born December 26, 2000.

That's not Nicholas Carr, but rather Andrew Morrow.

[anthony]

Going by any of these three figures, Kira Wales was clearly not born at the time of the Nupedia launch in March 2000.

The Reason magazine reference puts Kira at 5 in 2007. But with Jimbo, you never know. Maybe he's been lying about Kira's birthday as long as he's been lying about his own.

I seem to remember there being a story about the launch of Wikipedia being delayed due to something related to Kira, but I can't find any confirmation of it, and I might be remembering incorrectly.

Hmm, I just noticed that the part which says "And that is how Wikipedia came about." wasn't a direct quote. So I'm going to go with the assumption that Wales was being misleading as opposed to outright lying, and that the reporter reported what he implied rather than what he said.

[John Limey]

According to Nicholas Carr, however, Kira Wales was born December 26, 2000.

That's not Nicholas Carr, but rather Andrew Morrow.

Quite right. I should have read more carefully. On that basis, I think it's safe to exclude that date, and state categorically that the story can not be true because Kira Wales was born after the launch of Wikipedia. I've amended my above post accordingly.

[Moulton]

Things that follow cannot cause things that preceded absent some string theory stuff that Milton will probably fill us in on.

Imagine a possible future goal state. Your ability to imagine that future goal state might well motivate you to undertake a course of action to reach it. So while the goal state itself, once arrived at, did not, per se, cause the preceding effort to reach it, your ability to imagine it as a future outcome did cause the preceding effort. This is as close as I can come to a future event being said to have been the cause of a prior event.