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My family could use some Prayers if you don't mind.....*update below pics*


Forum: Recurrent Miscarriage and Pregnancy Loss

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  #1  
March 14th, 2012, 11:26 AM
plan4fate's Avatar I may bend, but not break
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Location: Wisconsin
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My (bare with me) Mother's cousin's daughter's daughter (aka, my cousin,t hey're all cousins to us) has something called Battens Disease. She was born normal and healthy, and at 2 she started with seizures that you can't control well, and at 3 she was diagnosed with Battens. Basically at that point, you begin regressing back to an infant. She's 8 years old as of this week, 5ft tall, and 110lbs. Beautiful girl (I'll put up a picture) but she has a feeding tube, cannot swallow, despite constant movement, she's atrophied. She gets sick easy.

The life span for someone diagnosed with Late infantile battens is 8-10 years. If diagnosed by 36 months (which she was) it's 8. She's living on borrowed time in God's graces right now. On her birthday, Averee had a seizure. Not uncommon because of cameras. But them she had another, and another.. and they took her to the hospital. This morning, they airlifted her to the children's hospital 8 hours away. The seizures have not stopped.

My family are currently packing cars and heading for the big city. Everyone except her Great grandparents who cannot afford healthwise to go until they know they have no other option.

Here is the thing. Two years ago on March 15th my father died. Last year on March 25th, Averee's great aunt Millie died of unknown heart disease. Our family is already stretched.

Please Pray that if it is Averee's time to go that her seizures stop so she can go in peace. Sedation does not stop her seizures. Please Pray that my family can bare this, another March death.

And please. if you can spare one... a prayer for me. I CANNOT go home, for any reason, until I have my green card. No matter what happens, I am stuck here in the USA, and alone since DH is on 12 hr shifts 7 days a week.


The pics below are heart breaking to see.... despite what some doctors say, Averee does have some consciousness. When she stops responding to her name is when they've been advised that she is completely gone. Right now they refer to her as "trapped". Right now, her name is all that she can truly respond to. If you say "A ver ee" she will attempt to turn her head. But if you just talk to her, nothing.



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2yrs old:


3 years old:


4th birthday: (you can see the huge difference in her here)


5th birthday: (and an even bigger change)


6th birthday : (she can no longer control her body movements)


7th birthday


8th birthday:







UPDATE:

Pardon the typing, I'm just pasting what my grandmother sent me.

"was just talking to eric ,they almost lost her last nite 4 dr. 5 nurses was with her ,gave her a new drug which took her breath away gave it to her a couple of times no seizures but a twitch in her face sleeping right now .the drs. talked to terri and rod they have to decide when worse to let her go how can they ask amother and father to decide that. anyway they toldthem that this is the last stage for her so it can happen anytime. shannon,tash,deanna pete and dan all left to go in today
will let you know if anything else takes place"

They've called the family in... to me, that signals the end. *cries*
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Last edited by plan4fate; March 14th, 2012 at 01:48 PM.
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  #2  
March 14th, 2012, 01:01 PM
Mega Super Mommy
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How heartbreaking Many prayers for you and your family
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  #3  
March 14th, 2012, 01:11 PM
IneedCoffee's Avatar Platinum Supermommy
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I am so sorry. She is precious. I hope that she and your family find peace. I just want to (already am) cry with you all.
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  #4  
March 14th, 2012, 01:33 PM
geogeek's Avatar Marsi's Mommy
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Your family is in my prayers.
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  #5  
March 14th, 2012, 01:40 PM
esparando para bebé's Avatar Proud Car Seat Technician
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And the camel's back just broke. I ****** hate rare!!!!!
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  #6  
March 14th, 2012, 05:52 PM
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  #7  
March 14th, 2012, 08:25 PM
Halloween81's Avatar Mega Super Mommy
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She is so precious, I have you and your family in my thoughts.
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Kimberly, wife to Jamie
Miscarriage at 10 weeks - February 14, 2009
Miscarriage of twin boys at 11 weeks - September 21, 2009
Chemical pregnancy - January 9, 2010
Miscarriage at 10 weeks - April 21, 2010
Miscarriage at 7 weeks - October 22, 2010
Miscarriage at 10 weeks - May 14, 2011
Miscarriage at 17 weeks - December 7, 2011 (My sweet little Joshua had Achondrogenesis type 2)
Miscarriage at 5 weeks - June 5, 2013

All test results normal. Reason for RPL unknown.

Annabel born healthy at 35 weeks - May 22, 2014

Last edited by Halloween81; March 14th, 2012 at 08:27 PM.
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