Hope For Elodie

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!


  • Anonymous
    • $100 
    • 5 yrs

Organizer and beneficiary

Ben Nilsson
Ventura, CA
Annie Nilsson

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