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(Daily Mail)   Four-year-old girl sets up lemonade stand to raise money for baby sister who has rare childhood Alzheimer's, which only affects 500 kids   ( dailymail.co.uk) divider line
    More: Hero, Jordan Gass-Poore, 1975, Mary Kekatos, EDT, Dailymail.com  
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5440 clicks; posted to Main » on 14 Apr 2017 at 11:20 AM (31 weeks ago)   |   Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



58 Comments     (+0 »)
 
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2017-04-14 08:18:24 AM  
This Alzheimers is so bad I can't even remember my high school years.
Oh wait, I'm 4.
 
2017-04-14 08:21:36 AM  
The sad state of our medical system summed up right there.
 
2017-04-14 08:30:32 AM  
Alzheimers is bad enough after a long, productive life.  I can't even imagine having it when your life has just started.
 
2017-04-14 09:46:17 AM  
City shut her down yet?
 
2017-04-14 11:12:40 AM  
Ok.  Never heard of this disease.   I'm sad now.
 
2017-04-14 11:22:23 AM  

edmo: City shut her down yet?


City officials shutdo .... DAMNIT!
 
2017-04-14 11:23:42 AM  

Chris Ween: Ok.  Never heard of this disease.   I'm sad now.


Yeah, I'm having trouble making a wisecrack.
 
2017-04-14 11:24:30 AM  
Since this is a Daily Mail article I now question tbe existence of little girls.
 
2017-04-14 11:25:24 AM  
as the father of 2 young boys....I couldnt imagine losing my child like they.....they would forget you...and never remember you again....HOW TERRIBLy SAD
 
2017-04-14 11:27:08 AM  
Hope they bought a vendor license.  City is gonna want their cut!
 
2017-04-14 11:30:59 AM  

slepygryhnd: The sad state of our medical system summed up right there.


This could not be further from the truth.  First of all, the disease affects 500 people worldwide.  I'd like to see these people get treatment in just about any other country.  Second, this is a clinical trial so the drug is free.  This is an absurdly overpriced GoFundMe to cover "travel" expenses.  Fine but show me the rule in Canada or the UK that pays for travel for medical care.  I doubt it exists.  And finally there are plenty of programs in this country for rare diseases that pay for travel and medical care because the company or government-grant hospital (or NIH) are studying the disease.  But for such a rare disease like this, I doubt it would make sense.  Why waste millions and millions of dollars on such a rare disease?
 
2017-04-14 11:31:59 AM  

slepygryhnd: The sad state of our medical system summed up right there.


No it's not. I'm guessing you didn't read the article (Who has time for that?).

Marian started experimental treatment earlier this week in Chicago for the condition which is often referred to as 'Childhood Alzheimer's'. She is involved in a new clinical trial of a drug developed to stabilize children in decline and halt the disease's progression. She will need this treatment every two weeks.

Since this is a clinical trial, there is already the funding for the development/research into this. The sister is just doing a good thing, and raising MORE money for it.
 
2017-04-14 11:32:37 AM  

edmo: City shut her down yet?


No, they put her on a one-way bus trip to Cincinnati.
 
2017-04-14 11:34:06 AM  
Thanks Jesus!
 
2017-04-14 11:35:44 AM  
Lemonade? Or Ice-T?
 
2017-04-14 11:35:46 AM  
Clicked on TFA to see the Lemon-aid stand.
Hell of a dairy she has going on, too.
 
2017-04-14 11:36:28 AM  

KAVORKA: Why waste millions and millions of dollars on such a rare disease?


why is it a waste?
and why is money even a factor?
 
2017-04-14 11:36:45 AM  

Ambivalence: Alzheimers is bad enough after a long, productive life.  I can't even imagine having it when your life has just started.


At least there won't be much for the kid to forget.

/yes, I've already got an isle seat.
//Alzheimer's is a horrible disease
 
2017-04-14 11:37:59 AM  
1 in 500 I don't believe it I thought this was America!, I can't understand why you won't give my child an opportunity to have this disability.

all four year olds are scamming for their mothers
 
2017-04-14 11:38:13 AM  
How can you tell when your 18-month year old has Alzheimer's?
 
2017-04-14 11:38:49 AM  
Did she remember to include the poison control surcharge in the price?
 
2017-04-14 11:39:46 AM  

vudukungfu: KAVORKA: Why waste millions and millions of dollars on such a rare disease?

why is it a waste?
and why is money even a factor?


Research on this disease might lead to breakthroughs in other related diseases as well.
 
2017-04-14 11:41:39 AM  
Just keep swimming, just keep swimming, just keep.... wait... what? Uh-oh.

Can you help me?
 
2017-04-14 11:41:48 AM  

Julius Pleaseher: How can you tell when your 18-month year old has Alzheimer's?


Probably a failure to develop motor or mental abilities leading to an EEG and an MRI for diagnosis.
 
2017-04-14 11:42:00 AM  
Also this does not affect poor or black people so money is no object
 
2017-04-14 11:43:35 AM  

vudukungfu: KAVORKA: Why waste millions and millions of dollars on such a rare disease?

why is it a waste?
and why is money even a factor?


You have to pick and choose your battles for research $$$.
 
2017-04-14 11:46:19 AM  
"Cyclodextrin (or VTS 270) has been tested. In lab trials on mice, it extended sufferers' lives five-fold."
Mom has moderate Alzheimer's.  I'm not sure extending her life five-fold would be a good thing.
 
2017-04-14 11:47:11 AM  
Christ that's just sad on any level.  Fark.
 
2017-04-14 11:47:47 AM  

Evil Mackerel: edmo: City shut her down yet?

No, they put her on a one-way bus trip to Cincinnati United flight.


ftfy
 
2017-04-14 11:48:58 AM  
the key there is extending suffering, make them hurt and make them pay again and again and again and again
 
2017-04-14 11:50:42 AM  

cgraves67: Julius Pleaseher: How can you tell when your 18-month year old has Alzheimer's?

Probably a failure to develop motor or mental abilities leading to an EEG and an MRI for diagnosis.


Thanks. That's horrible.
 
2017-04-14 11:53:36 AM  
 
2017-04-14 11:54:54 AM  
Assuming this is true (natural skeptic here) she has already done more with here 4 years than I have with my 40. My biggest claims to fame at 4 were leaving two halves of a worm in the pocket of my jeans for my mom to find when doing laundry and almost drowning myself in prospect park.
 
2017-04-14 11:55:49 AM  
.....aaaaaannnnnd almost immediately forgot why she was sitting roadside at a stand while holding lemons.
 
2017-04-14 11:55:59 AM  
But the important thing is that we kill Obamacare so guys don't have to pay (less) for women's vajayjay problems now than down the road.
 
2017-04-14 12:02:07 PM  

vudukungfu: KAVORKA: Why waste millions and millions of dollars on such a rare disease?

why is it a waste?
and why is money even a factor?


Because we just spent $18,000,000 bombing a tunnel in Afghanistan and $60,000,000 firing missiles near an airbase in Syria.  That's your hard earned tax dollars being spent.  Not much left over for stupid shiat like "diseases."
 
2017-04-14 12:07:33 PM  
Bootstrappy - I like it! I'm afraid I don't care for lemonade myself, but I'll pray for her.
 
2017-04-14 12:09:31 PM  

Walker: This Alzheimers is so bad I can't even remember my high school years.
Oh wait, I'm 4.


You're windows seat on united is reserved.
 
2017-04-14 12:12:26 PM  
"
Patricia Dickson, chief of medical genetics at Harbor UCLA Medical Center, explained how the condition affects patients saying: 'The muscles get stiff and the patients are unable to walk and speech becomes extremely difficult and eventually they do die from their condition.'
It affects just 500 children worldwide. In most cases, symptoms appear around the age of four. Sufferers rarely live past the age of 10. There is no cure for the disease. "

JFC. That's a farking tragedy. I can't imagine many things worse than spending five years watching your young child die of an incurable degenerative disease. I'm glad there is apparently some progress towards a treatmebt.
 
2017-04-14 12:13:40 PM  
She doesn't have a license for this.
Shut it down.
 
2017-04-14 12:13:49 PM  

cgraves67: Julius Pleaseher: How can you tell when your 18-month year old has Alzheimer's?

Probably a failure to develop motor or mental abilities leading to an EEG and an MRI for diagnosis.


It is probably much much much more common than 500 cases. The MRI is required to diagnose it. I would wager that there are probably 100k+ people alive today that were born with this and almost all are diagnosed as developmentally disabled or retarded.
 
2017-04-14 12:22:14 PM  

madgonad: cgraves67: Julius Pleaseher: How can you tell when your 18-month year old has Alzheimer's?

Probably a failure to develop motor or mental abilities leading to an EEG and an MRI for diagnosis.

It is probably much much much more common than 500 cases. The MRI is required to diagnose it. I would wager that there are probably 100k+ people alive today that were born with this and almost all are diagnosed as developmentally disabled or retarded.


True. There are probably sufferers who have been misdiagnosed. Although, it my experience with children's mental disabilities, the doctors treat, and if it doesn't work, they pass you on to better specialists. As long as you can stay in the system, someone will figure out what is wrong.

My son went through 2 children's hospitals before landing in one that could help him. His disease isn't quite as rare as that one.
 
2017-04-14 12:24:32 PM  

DoctorWhat: Lemonade? Or Ice-T?


img.fark.netView Full Size
 
2017-04-14 12:27:50 PM  

slepygryhnd: The sad state of our medical system summed up right there.


It's an experimental treatment. I don't know of any country that pays for that.
 
2017-04-14 01:16:59 PM  

Two16: DoctorWhat: Lemonade? Or Ice-T?

[img.fark.net image 794x600]


Just have an Arnold Palmer.
 
2017-04-14 01:37:37 PM  

lennavan: vudukungfu: KAVORKA: Why waste millions and millions of dollars on such a rare disease?

why is it a waste?
and why is money even a factor?

Because we just spent $18,000,000 bombing a tunnel in Afghanistan and $60,000,000 firing missiles near an airbase in Syria.  That's your hard earned tax dollars being spent.  Not much left over for stupid shiat like "diseases."


Hey we killed 30 ragheads. So good fpr us.
 
2017-04-14 01:40:04 PM  

Wyalt Derp: Bootstrappy - I like it! I'm afraid I don't care for lemonade myself, but I'll pray for her.


Do something that makes you feel better about doing nothing.
 
2017-04-14 01:40:22 PM  

KAVORKA: slepygryhnd: The sad state of our medical system summed up right there.

This could not be further from the truth.  First of all, the disease affects 500 people worldwide.  I'd like to see these people get treatment in just about any other country.  Second, this is a clinical trial so the drug is free.  This is an absurdly overpriced GoFundMe to cover "travel" expenses.  Fine but show me the rule in Canada or the UK that pays for travel for medical care.  I doubt it exists.  And finally there are plenty of programs in this country for rare diseases that pay for travel and medical care because the company or government-grant hospital (or NIH) are studying the disease.  But for such a rare disease like this, I doubt it would make sense.  Why waste millions and millions of dollars on such a rare disease?


The drug companies want to waste millions and millions of dollars on this so they can charge  $30,000 for each shot, required every two weeks. (And have the government  (oh wait, me, the taxpayer) pay for it.)
 
2017-04-14 01:51:20 PM  

cgraves67: Although, it my experience with children's mental disabilities, the doctors treat, and if it doesn't work, they pass you on to better specialists. As long as you can stay in the system, someone will figure out what is wrong.


That falls under "common things are common."  Do you want the million dollar work-up so the doctor can be completely sure?  Or do you want the doctor to make a pretty farking good guess, treat and if that treatment fails, escalate the spending?

Also, with mental health in children, there's a great deal of parents who doctor shop until they get the diagnosis that they totally knew their kid had all along!  Not saying that's you but you can read lots of blogs where people recount the story just like yours.  "I knew my kid was autistic and it took the 10th doctor to finally figure it out!"
 
2017-04-14 02:04:22 PM  

lennavan: cgraves67: Although, it my experience with children's mental disabilities, the doctors treat, and if it doesn't work, they pass you on to better specialists. As long as you can stay in the system, someone will figure out what is wrong.

That falls under "common things are common."  Do you want the million dollar work-up so the doctor can be completely sure?  Or do you want the doctor to make a pretty farking good guess, treat and if that treatment fails, escalate the spending?

Also, with mental health in children, there's a great deal of parents who doctor shop until they get the diagnosis that they totally knew their kid had all along!  Not saying that's you but you can read lots of blogs where people recount the story just like yours.  "I knew my kid was autistic and it took the 10th doctor to finally figure it out!"


For us, the doctor's were like "we're pretty sure what this is, but he's got such a bad case, we aren't comfortable treating it here. Go to X. They have more experience with this sort of thing."
 
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