Horrible Family News Yesterday

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_candygal
_Emeritus
Posts: 1432
Joined: Sat May 07, 2016 2:38 am

Re: Horrible Family News Yesterday

Post by _candygal »

Beautiful little girl with a loving, hopeful family. Loved this!! Such courage in that sweet soul and example to all of us!! Thanks for the update Kevin.
_Always Changing
_Emeritus
Posts: 940
Joined: Mon Dec 03, 2012 6:17 am

Re: Horrible Family News Yesterday

Post by _Always Changing »

My eyes are wet. Happy that she is doing so well.

Saw these the other day.

https://www.fda.gov/NewsEvents/Newsroom ... 555613.htm

http://www.raredr.com/news/fda-approves ... sease-drug
Problems with auto-correct:
In Helaman 6:39, we see the Badmintons, so similar to Skousenite Mormons, taking over the government and abusing the rights of many.
_Kevin Graham
_Emeritus
Posts: 13037
Joined: Fri Oct 27, 2006 6:44 pm

Re: Horrible Family News Yesterday

Post by _Kevin Graham »

Thanks everyone. That video of her on the news brightens my day every time. But the video doesn't really do justice to what she is going through on a daily basis.

She lives with a feeding tube inserted directly into her stomach. She hasn't spoken in two years, she is no longer able to eat through her mouth because she has no muscle control of her tongue. She frequently cries in pain due to severe leg cramps because her muscles haven't been used for so long. On top of all that, she has brain surgery every couple weeks where the experimental enzymes are inserted, and roughly 20% of the time she acquires some kind of infection from the procedure which causes fever, pneumonia, etc. I can't imagine having to go through this with my own child. If she survives this disease she will be the first person ever to survive it.
_Kishkumen
_Emeritus
Posts: 21373
Joined: Sat Dec 13, 2008 10:00 pm

Re: Horrible Family News Yesterday

Post by _Kishkumen »

That's a horrific ordeal to endure.
"Petition wasn’t meant to start a witch hunt as I’ve said 6000 times." ~ Hanna Seariac, LDS apologist
_Always Changing
_Emeritus
Posts: 940
Joined: Mon Dec 03, 2012 6:17 am

Re: Horrible Family News Yesterday

Post by _Always Changing »

Kevin Graham wrote:Thanks everyone. That video of her on the news brightens my day every time. But the video doesn't really do justice to what she is going through on a daily basis.

She lives with a feeding tube inserted directly into her stomach. She hasn't spoken in two years, she is no longer able to eat through her mouth because she has no muscle control of her tongue. She frequently cries in pain due to severe leg cramps because her muscles haven't been used for so long. On top of all that, she has brain surgery every couple weeks where the experimental enzymes are inserted, and roughly 20% of the time she acquires some kind of infection from the procedure which causes fever, pneumonia, etc. I can't imagine having to go through this with my own child. If she survives this disease she will be the first person ever to survive it.
Thank you for the clarification. There is hope. To not know how to break up a leg cramp :cry: .
Problems with auto-correct:
In Helaman 6:39, we see the Badmintons, so similar to Skousenite Mormons, taking over the government and abusing the rights of many.
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