Horrible Family News Yesterday

[Guest]

I'm not the crying type, but having children of mine own...that video was hard to watch.

From one anonymous, exmormon poster on the Internet, I wish your family as much peace as your hearts can hold.

I'm so sorry.

[_canpakes]

Kevin -

It is truly heartbreaking to see a child loosed from their parents at so young an age... condolences to your brother and his family in this trying time.

[_sunstoned]

I am sending out all of my positive thoughts and support to you and yours.

[_kamenraider]

I had missed this thread before. The video was very touching. Such a sweet little girl. So sorry, Kevin. I was glad to see that she enjoyed some happy times, and am partially consoled by the thought that her suffering is over.

[_Kevin Graham]

Thanks everyone. I'm sorry if I gave the impression that she had passed, but she is actually still fighting this thing. She is receiving a special treatment up in Columbus Ohio at Nationwide Hospital, along with three other Battens children. Some pharmaceutical corporation is experimenting with a new treatment and she was chosen out of more than a few dozen kids across the country to partake in the experiment. It involves injecting enzymes into her brain every couple of weeks, which is taxing in and of itself on her poor little body. It was supposed to be a 14 month long process based on results but they've extended the treatment further. Since the treatment she had been rushed to the ER because of high fevers and last month they had to insert a feeding tube into her stomach because she stopped eating.

It is really difficult at this point to tell whether or not the treatment is working at all. She is still degenerating, she is unable to speak full sentences, and she shakes a lot as if she has Parkinson's disease. But there is a sliver of hope, as the other children in the project appear to be improving some.

No one has ever survived this horrible disease, but we're still hoping the treatment's results take a dramatic turn.

[_Runtu]

Thanks everyone. I'm sorry if I gave the impression that she had passed, but she is actually still fighting this thing. She is receiving a special treatment up in Columbus Ohio at Nationwide Hospital, along with three other Battens children. Some pharmaceutical corporation is experimenting with a new treatment and she was chosen out of more than a few dozen kids across the country to partake in the experiment. It involves injecting enzymes into her brain every couple of weeks, which is taxing in and of itself on her poor little body. It was supposed to be a 14 month long process based on results but they've extended the treatment further. Since the treatment she had been rushed to the ER because of high fevers and last month they had to insert a feeding tube into her stomach because she stopped eating.

It is really difficult at this point to tell whether or not the treatment is working at all. She is still degenerating, she is unable to speak full sentences, and she shakes a lot as if she has Parkinson's disease. But there is a sliver of hope, as the other children in the project appear to be improving some.

No one has ever survived this horrible disease, but we're still hoping the treatment's results take a dramatic turn.

What a nightmare, Kevin. I'm so sorry to hear she and her family are suffering like this.

[_Analytics]

Thanks everyone. I'm sorry if I gave the impression that she had passed, but she is actually still fighting this thing. She is receiving a special treatment up in Columbus Ohio at Nationwide Hospital, along with three other Battens children. Some pharmaceutical corporation is experimenting with a new treatment and she was chosen out of more than a few dozen kids across the country to partake in the experiment. It involves injecting enzymes into her brain every couple of weeks, which is taxing in and of itself on her poor little body. It was supposed to be a 14 month long process based on results but they've extended the treatment further. Since the treatment she had been rushed to the ER because of high fevers and last month they had to insert a feeding tube into her stomach because she stopped eating.

It is really difficult at this point to tell whether or not the treatment is working at all. She is still degenerating, she is unable to speak full sentences, and she shakes a lot as if she has Parkinson's disease. But there is a sliver of hope, as the other children in the project appear to be improving some.

No one has ever survived this horrible disease, but we're still hoping the treatment's results take a dramatic turn.

Thanks for keeping us updated. The way your family is pressing on in the face of such horror is inspiring.

[_Servant]

This is a tragedy. It appears to be a genetic disorder in most cases, and both parents must carry the recessive gene. Is your brother within Mormonism? There have been cases of genetic problems within Mormonism due to the intermarriage of Mormons within a fairly confined geographical area. Here is an article:
The Genetic Catastrophe That Has Sprung from Polygamy by Steve Benson: http://exmormon.org/d6/drupal/The-Genet ... m-Polygamy

Prayers that your niece may experience a miracle.

[_Chap]

This is a tragedy. It appears to be a genetic disorder in most cases, and both parents must carry the recessive gene. Is your brother within Mormonism? There have been cases of genetic problems within Mormonism due to the intermarriage of Mormons within a fairly confined geographical area. Here is an article:
The Genetic Catastrophe That Has Sprung from Polygamy by Steve Benson: http://exmormon.org/d6/drupal/The-Genet ... m-Polygamy

This is perhaps not the time or place for any discussion, however scientific or well based in evidence (and I'm not sure how Steve Benson measures up in that regard), that might be thought to imply that this child's affliction is the result of any action of its forebears. The family already has enough to put up with without going into that. I'll delete this post if you delete yours.

[_Fence Sitter]

Kevin,

While not quite the same thing you are going through, I too have a child fighting a life threatening disease, though his prognosis is not nearly as bleak or immediate.

Know that there are others out there who share your pain and are wishing you and yours a favorable outcome.