Condition: Linear Morphea coup de Sabre
City, State: Bend, OR
Club: Westside Village Magnet School Sparrow Club Service Hours:
Date Adopted: 10/23/2014
During the summer of 2012, Hallei’s parents began to notice that the skin on her forehead would change color but would go away quickly. Then they noticed a strange shiny spot of skin on her forehead. By the end of August, it had become a permanent discoloration and a dent on her forehead began to form.
Doctor’s could find nothing, and Hallei’s condition began to worsen. The discoloration had begun to move down into her face. They put out a nationwide request asking for other physician’s insight into a possible diagnosis.
A physician at OHSU in Portland responded and requested photos. Photos of Hallei were sent up on Friday afternoon, and Monday morning they received a call saying that they needed to get to Portland right away. Hallei’s head was now totally discolored and some of her hair was missing. The doctor diagnosed a very rare condition known as Linear Morphea coup de Sabre. It is an autoimmune disorder that destroys the layer under the skin, then the bones. Eventually, it deforms and collapses the area. It also goes into the skull, killing the hair follicles and keeping them from ever growing back. If it progresses too much it can cause seizures and brain damage to happen. Doctors told the family that if Hallei’s condition had progressed any further, she may not have survived.
Because this disorder is so rare, there are no known tests for it. It has to be treated with chemotherapy and steroids similar to a treatment for cancer. She began oral chemo immediately as well as steroids. Doctors said they would know within a month if the treatments worked. Two months later, it began to flare up again. She developed a dent in her head.
Currently, Hallei is living in California to be close to the University of San Francisco, where doctors are more knowledgable about her condition and they monitor Hallei closely. Hallei has to have frequent MRI’s to see if the autoimmune disease has become more aggressive and if it does they must increase the amount of chemotherapy she takes. Doctors are still unsure what will stop the disorder though.
Hallei cannot do most of the things other kids her age would do. She loves to play sports, but most of the time she doesn’t feel well enough to play. She cannot have other kids over, or spend time at friend’s homes, because the risk of illness is just too high.
Hallei will be adopted as a Sparrow to Westside Village Magnet School. Students will work hard to raise money for Hallei through sponsored community service and fundraising projects.
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