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tori's medical fund (rare syndrome)

$4,650 of $10,000 goal

Raised by 85 people in 13 months
Tori is a 16yr old girl with a rare syndrome called proteus syndrome there is only about 200 people in the world with this syndrome. Proteus syndrome is a overgrowth disorder. Tori is now on airways alert because the bones in tori's neck are 4 times the size of what they should be and are closing tori's airways her airways are now the size of baby's airways
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miss tori has been getting alot of pain lately all over her body if you can help tori please do thanks
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if you can help please do it would mean so much. we have had alot of appointments lately and the stuff we are been told is getting harder and harder to hear with what's happen to tori with this rare syndrome called proteus syndrome there is only about 120 people still living with this syndrome in the world.
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Hey guys just an update on today Tori had a great day at school I headed off to an appointment for Tori with her specialist about the trial drug we are trying to get for her at the moment it's looking like it's going to be a go ahead with it all. we were given the pros and the cons of it all that it may help her or it may not or it could make things worse but with what Tori's dealing with at the moment. I think we know where we're leaning towards. As a lot of use know Tori suffers with Proteus syndrome there's 200 documented cases in the world that we know of about 120 still living Tori's suffers with a bony Overgrowth of the head and skull she has a bony Overgrowth in her neck which is showing the bones to be 4 times the size of what they should be which is restricting Tori's Airways Tori also has scoliosis in the top and lower part of her back Tori also has abnormalities in her legs which stops her from walking she has the overgrowths tissues on the soul of one of her feet and we have just picked up it may be starting to develop on her other foot. Tori's has had lots and lots of surgeries at the moment because of Tori's Airways we've been told that everything maybe just put on hold because they don't know what Tori's Airways can handle any more and putting her to sleep for anything can be classed as very dangerous they don't know if they were to take her in if they can do an emergency trackie because the Boney Overgrowth in her neck.
please keep praying for my girl tori and give us strength that this all works out for the best . thankyou guys
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$4,650 of $10,000 goal

Raised by 85 people in 13 months
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SN
$50
Syed Naqvi
17 days ago
$100
Anonymous
29 days ago
$100
Anonymous
1 month ago
$50
Anonymous
1 month ago
PC
$80
Paul Cragg
1 month ago
PB
$30
Patricia Barden
2 months ago
$100
Anonymous
2 months ago
$25
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2 months ago
$5
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2 months ago
$20
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10 months ago
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