Blue light aids ill Mennonite children

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Autumn2004

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In the lush, green pastures of Pennsylvania Dutch country, where life revolves around the one-room schoolhouse, the farm and the church, and locals speak a distinctive German dialect, the strange blue lights beam from a handful of homes.


To the Amish and Mennonites they mean one thing — the presence of an extraordinarily rare disease that seems to cruelly target their communities, forcing afflicted children to spend 10 to 12 hours a day, undressed, under lights.


The children suffer from a genetic disorder that causes high levels of a toxin called bilirubin to build up in their bodies, resulting in severe jaundice that, if untreated, causes brain damage and death.

http://news.yahoo.com/s/ap/20070520/ap_on_he_me/blue_light_kids;_ylt=Av2yIyOf.jVw1RljbaWsZyXMWM0F

So sad! I have never heard of this before and we have family who live in mennonite areas.
 
Wow, that's really interesting!

3 of my kids were jaundiced at birth, but that was a quick and easily resolved situation, not like what they're talking about here. It was hard to deal with the bili lights for the short time that we needed to, it must be heartbreaking for these families.
 
hipmamajen said:
Wow, that's really interesting!

3 of my kids were jaundiced at birth, but that was a quick and easily resolved situation, not like what they're talking about here. It was hard to deal with the bili lights for the short time that we needed to, it must be heartbreaking for these families.
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I looked up the disorder and they have a website for it. Apparently you cannot buy these kind of lights in the united states only two foot ones made for babies so the lights can run up to $10,000. My daughter had jaundice too but it was easily remedied.
 
Autumn2004 said:
I looked up the disorder and they have a website for it. Apparently you cannot buy these kind of lights in the united states only two foot ones made for babies so the lights can run up to $10,000.
Click to expand...

Wow, that's just awful!

Yeah, we just had the baby ones, and we only "rented" them, so it wasn't a big deal. I just can't even imagine how these families are coping!
 
I live in the heart of this area, and have many Amish, (my mother was old order Amish) and Mennonite relatives, and I have never seen, or heard of this blue light either. I know that the clinic in Strasburg has made huge advances in genetic studies, with the help of our local Amish folks.
 
hipmamajen said:
Wow, that's just awful!

Yeah, we just had the baby ones, and we only "rented" them, so it wasn't a big deal. I just can't even imagine how these families are coping!
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The lights have to be changed every three to four months. I cant imagine the financial struggle these families go through.
 
PSUfan said:
I live in the heart of this area, and have many Amish, (my mother was old order Amish) and Mennonite relatives, and I have never seen, or heard of this blue light either. I know that the clinic in Strasburg has made huge advances in genetic studies, with the help of our local Amish folks.
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Im glad its not common. It makes our inconveinences and troubles seem so small.
 
I'm really cynical of medical intervention, especially at birth.
And, as I remember, one of the many medical procedures pressed on birthing women increases the chances of jaundice. But this group of women, more than others, shouldn't be at such a high risk of this.
 
T-Rex said:
I'm really cynical of medical intervention, especially at birth.
And, as I remember, one of the many medical procedures pressed on birthing women increases the chances of jaundice. But this group of women, more than others, shouldn't be at such a high risk of this.
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The only thing I can think of that might put them at a higher risk is marrying in their own small community and genetic issues being passed on that way ( I might be talking out my butt though since Im not definitely sure that it might be part of the problem). I would also think medical intervention would not be common in amish and mennonite communities and home births would be more prevalent.

Medical intervention does have its benefits but there are way too many sometimes. My daughter would not be here today if it werent for medical intervention.
 
My understanding is that they're saying this is a genetic problem, and the circumstances surrounding the birth wouldn't make any difference.
 
hipmamajen said:
My understanding is that they're saying this is a genetic problem, and the circumstances surrounding the birth wouldn't make any difference.
Click to expand...

It is a genetic disorder :)

KatK- That is a horrible disease too, For adults it would be a change that you could live with but with kids ,who dont understand, its just heartbreaking. You want your children to live their life to the fullest and have it better and easier than you did and it would hurt to have them so limited in life.
 
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