Ashley Mortensen

I am asking for help for my 28-year-old niece Ashley who was born with a rare condition called arteriovenous malformation (AVM) that causes life-threatening bleeds from her nose, mouth, and left eye. The bleeds come with no warning and are profuse and traumatic. She loses so much blood that she often passes out, due to low blood pressure.These types of bleeds always come with an emergency surgery and/or a blood transfusion — to date she has had 71 surgeries.

Sadly, not many doctors treat this condition, and with the aggressive nature of Ashley’s AVM, many doctors refuse to help. She had every treatment available in the U.S. to control her AVM — embolizations, surgical resections, direct puncture, experimental drugs, and more. In 2017, a doctor removed the left side of her face to control the bleeding, but her condition only worsened, and she was deemed inoperable.

I watch in awe as Ashley handles her condition with dignity. She even orchestrates an annual fundraiser with proceeds going to the Vascular Birthmarks Foundation’s AVM research efforts in the hope of finding a cure. Not able to have a typical nine-to-five job due to the constant surgeries, she started a clothing brand, Wishlist by Ashley Marion LLC, making all the garments herself.

Ashley’s condition worsened this March, and she had no choice but to go to Milan, Italy, to undergo treatment with VBF Medical Director Dr. Giacomo Colletti, who performs a groundbreaking experimental procedure called electro-sclero therapy. Ashley is one of only ten patients worldwide to undergo this new treatment. We pray that Ashley will be fully cured after receiving all of the treatments performed by Dr. Colletti. This procedure is not FDA-approved in the United States, which is why Ashley is being treated in Italy. Her insurance will not cover the procedure, and she has been denied appeal after appeal.

To say this is a financial burden is an understatement, but there is no choice, as this is Ashley’s only hope. This first procedure cost our family about $35,000. Although her clothing line is successful, she doesn’t make nearly enough to cover this treatment and the ones to come.

The surgery cannot be performed in one visit, and at least three more will be required, including the removal of the dead AVM cells in her face and to reconstruct the disfigurement caused by the disease.

This is the first glimmer of hope my niece has had, and any contribution you can make to help with her medical bills will be appreciated.

Below are some pictures of her journey.