Hope For Elodie

$6,275 of $16k goal

Raised by 109 people in 1 month
BN
Ben Nilsson
on behalf of Annie Nilsson
 VENTURA, CA
Elodie is a brilliant, beloved little girl who suffers from a condition  called intestinal lymphangiectasia. This is a digestive disorder where the lymphatic vessels supplying the lining of the small intestine are dilated and malformed. This leads to malabsorption of nutrients; chronic diarrhea and vomiting; a dangerously compromised immune system; and severe swelling of the face, abdomen and limbs.


Elodie's case is so severe that she currently cannot tolerate any food. Her sole source of nutrition is a special medical formula called Vivonex Pediatric. She's never tasted ice cream, pizza, or birthday cake. She receives extremely painful monthly inter-muscular injections of a drug called Octreotide that leave her limping and bruised for days. She has to endure frequent hospital stays, regular blood draws, and IV infusions. 


Although it is prescribed by her doctor and is a medical necessity, her insurance refuses to pay for her medical formula, Vivonex, and for her required supplements. The out of pocket cost for these is currently over $800 a month.

Additionally, her doctors have prescribed her a common medication called Sildenafil that has shown some promise treating complex lymphatic disorders, but her insurance is refusing to cover this as well. They have also refuse to recognize the medical necessity of her recent MRI at Stanford,  and have left her family with a bill for over $24,000

Any donations collected here will go toward paying for her formula, her medication, her out of pocket medical expenses, and toward spreading awareness of this heartbreaking disease.

A little help goes a long way in helping this darling girl get the care she needs.  Thank you from the bottom of our hearts!
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$6,275 of $16k goal

Raised by 109 people in 1 month
Created November 27, 2016
BN
Ben Nilsson  
on behalf of Annie Nilsson
$30
Frauke Timm
2 days ago

Alles Gute aus Deutschland! Great wishes from Germany!

MM
$50
Maggie M
5 days ago
$30
Paul Waring
6 days ago
MB
$5
Marika Biolcati
6 days ago
$20
Anonymous
7 days ago
TS
$100
Tom Songs
15 days ago

Here's to a healthy Elodie From a lifelong Nilsson roadie

$10
Osiel Cruz
15 days ago
$10
Anonymous
28 days ago
MW
$20
Mark Waldman
29 days ago
$30
Todd Lawrence
29 days ago
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