Horrible Family News Yesterday
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Re: Horrible Family News Yesterday
You are going to search and hope and pray and cry and grasp at straws. Having been in and part of childrens cancer wards and groups you are facing a terrible time.
Find a support group. Won't change things but it will help a lot as you go through it.
Some 'loving God' to let kids get this stuff.
Find a support group. Won't change things but it will help a lot as you go through it.
Some 'loving God' to let kids get this stuff.
“Those who never retract their opinions love themselves more than they love truth.”
― Joseph Joubert
― Joseph Joubert
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Re: Horrible Family News Yesterday
Just an update. My niece's trial run up in Columbus Ohio is about to end. My brother and his family had been hoping the FDA would approve the test enzyme that she has been receiving over the past couple years and their wish came true today:
http://bdsra.org/fda-approves-first-tre ... n-disease/
This means that when they return to Georgia this fall, Layla can receive the same treatment from doctors here. It is really hard to determine how successful this has been. She started the trial run with two other kids with Battens and reactions to the drug vary.
While Layla is still degenerating, it appears to be happening much slower rate than expected. She hasn't spoken since April of 2016, and she requires braces on her legs to walk around (with assistance). Normally someone at her age would have gone blind already but that doesn't appear to be happening yet so the family is hoping that the enzyme is working to at least halt the progression of the disease.
Only time will tell, but we're happy the FDA approved this so she can continue her treatments locally.
http://bdsra.org/fda-approves-first-tre ... n-disease/
This means that when they return to Georgia this fall, Layla can receive the same treatment from doctors here. It is really hard to determine how successful this has been. She started the trial run with two other kids with Battens and reactions to the drug vary.
While Layla is still degenerating, it appears to be happening much slower rate than expected. She hasn't spoken since April of 2016, and she requires braces on her legs to walk around (with assistance). Normally someone at her age would have gone blind already but that doesn't appear to be happening yet so the family is hoping that the enzyme is working to at least halt the progression of the disease.
Only time will tell, but we're happy the FDA approved this so she can continue her treatments locally.
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Re: Horrible Family News Yesterday
Best to you and family on this good news. Please keep us posted.
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Re: Horrible Family News Yesterday
Same here. Good luck, and steadfast courage.
Zadok:
I did not have a faith crisis. I discovered that the Church was having a truth crisis.
Maksutov:
That's the problem with this supernatural stuff, it doesn't really solve anything. It's a placeholder for ignorance.
I did not have a faith crisis. I discovered that the Church was having a truth crisis.
Maksutov:
That's the problem with this supernatural stuff, it doesn't really solve anything. It's a placeholder for ignorance.
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Re: Horrible Family News Yesterday
All the best wishes for her and your family.
“The ideal subject of totalitarian rule is not the convinced Nazi or the dedicated communist, but people for whom the distinction between fact and fiction, true and false, no longer exists.”
― Hannah Arendt, The Origins of Totalitarianism, 1951
― Hannah Arendt, The Origins of Totalitarianism, 1951
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Re: Horrible Family News Yesterday
When she was just a baby with her cousins...
These were taken just before she moved to Ohio for her treatment:
And this was from July 2015 when I visited her in Ohio:
These were taken just before she moved to Ohio for her treatment:
And this was from July 2015 when I visited her in Ohio:
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Re: Horrible Family News Yesterday
Kevin thanx for the update.
Beautiful kids.
Blessings to all.
Beautiful kids.
Blessings to all.
a.k.a. Pokatator joined Oct 26, 2006 and permanently banned from MAD Nov 6, 2006
"Stop being such a damned coward and use your real name to own your position."
"That's what he gets for posting in his own name."
2 different threads same day 2 hours apart Yohoo Bat 12/1/2015
"Stop being such a damned coward and use your real name to own your position."
"That's what he gets for posting in his own name."
2 different threads same day 2 hours apart Yohoo Bat 12/1/2015
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Re: Horrible Family News Yesterday
Fantastic! Very happy for you
Dr CamNC4Me
"Dr. Peterson and his Callithumpian cabal of BYU idiots have been marginalized by their own inevitable irrelevancy defending a fraud."
"Dr. Peterson and his Callithumpian cabal of BYU idiots have been marginalized by their own inevitable irrelevancy defending a fraud."
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Re: Horrible Family News Yesterday
Excellent news, Kevin. Beautiful kids.
"Petition wasn’t meant to start a witch hunt as I’ve said 6000 times." ~ Hanna Seariac, LDS apologist
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Re: Horrible Family News Yesterday
Layla was in the local news: http://www.10tv.com/article/nch-patient ... en-disease