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post #1 of 18 (permalink) Old 02-21-2008, 10:20 AM Thread Starter
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My God-Daughter

My beautiful, intelligent, full of life, 13 year old DGD is in intensive care for the third time in two months. She has an AVM (arteriovenous malformation) of the brain stem and it is inoperable by traditional surgical means. Her brain has been swelling since having gamma knife (radiation) surgery a few months ago and she has gotten progressively worse. She has lost her ability to walk, talk clearly, has developed severe tremors in her right arm and cannot see due to not being able to raise her eyelids, unless she does it manually. She is having an MRI right now to see if she has had another bleed. She really in bad condition and very scared. All I feel right now is totally helpless and very scared. If you can send up some positive thoughts and prayer here and there her way, her family and I would be most grateful.
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post #2 of 18 (permalink) Old 02-21-2008, 12:25 PM
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How scary, TYM. I'm praying.

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Someone I love very much has Friedreich's Ataxia a devastating, genetically-based neurological disorder that progressively takes away a person's motor skills, speech skills, bone and muscle strength and, ultimately, his or her life. Click the link to watch and learn more.
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post #3 of 18 (permalink) Old 02-21-2008, 01:18 PM
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Poor kid. Click here to enlarge Good thoughts for her.
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post #4 of 18 (permalink) Old 02-21-2008, 04:17 PM
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Poor thing.. prayers said.
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post #5 of 18 (permalink) Old 02-21-2008, 04:29 PM
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I'm so sorry. A friend of ours was just diagnosed with this condition and I had never heard of it.


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post #6 of 18 (permalink) Old 02-21-2008, 09:38 PM
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That sounds awful. I am so sorry Click here to enlarge

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post #7 of 18 (permalink) Old 02-22-2008, 05:52 AM
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How scary! I'm so sorry. I'll be thinking of her. Click here to enlarge
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post #8 of 18 (permalink) Old 02-22-2008, 06:16 AM
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Oh wow I'm so sorry.
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post #9 of 18 (permalink) Old 02-22-2008, 06:56 AM Thread Starter
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Quote:
Originally Posted by Noodle
I'm so sorry. A friend of ours was just diagnosed with this condition and I had never heard of it.
AVM's are often undiagnosed and only found as an incidental finding during an autopsy or testing for something else. Rachel's was diagnosed about 1-1/2 years ago when it first bled. The biggest problem Rachel faces is that her AVM is on the brainstem. I spent two hours with her last night. She is such a brave girl and doesn't want anyone to worry. She doesn't want to ask for help of any kind and is clinging to her independence. Today the doctors will make their decision about what they are going to try to do to relieve the swelling. None of the options sound pleasant. Thank you all for your thoughts. Click here to enlarge Keep them up please, she really needs them.
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post #10 of 18 (permalink) Old 02-23-2008, 12:26 PM
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I'm so sorry, good thought are being sent.
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post #11 of 18 (permalink) Old 02-23-2008, 03:32 PM
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Good thoughts to her. I'm so sorry.
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post #12 of 18 (permalink) Old 02-24-2008, 11:51 PM
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I'm so sorry. Sending good thoughts your way. Click here to enlarge
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post #13 of 18 (permalink) Old 02-25-2008, 11:58 AM
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Poor girl. Click here to enlarge I hope she makes a full recovery.
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post #14 of 18 (permalink) Old 02-25-2008, 05:57 PM
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Praying for her and all of you. Click here to enlarge
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post #15 of 18 (permalink) Old 02-29-2008, 05:04 PM
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My son's basically exploded almost two years ago. After reading your gd story, we are luckier than I thought. He almost didn't make it but at least they were able to repair his. He's still trying to over come some issues but is alive and healthy.

Please keep us updated.
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post #16 of 18 (permalink) Old 03-03-2008, 08:39 AM
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My sister had one about 10 years ago. She's in my thoughts.

Fuck the typos
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post #17 of 18 (permalink) Old 03-13-2008, 12:43 PM
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Keeping her in my thoughts.
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post #18 of 18 (permalink) Old 03-16-2008, 12:33 PM
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Poor baby Click here to enlarge . Positive thoughts headed her way for a full recovery. Click here to enlarge
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