At age 4, Kelleigh Gustafson was diagnosed with massive arteriovenous malformations (AVMs) affecting the right side of her head, neck and chest. A vascular anomaly is easiest described as when one's arteries multiply at a dangerously high rate creating a mass. The mass is potentially fatal for two reasons:
Kelleigh's condition is exceptionally rare because of the location of her vascular anomaly. Whereas the anomaly in most patients' cases occurs in areas that can be surgically removed, Kelleigh's exists on the right side of her head, affecting her sensory organs, trachea, esophagus, and most importantly her brain and heart.
Treatment for vascular anomalies has thus far proved complicated and life-threatening. Kelleigh's current treatment includes extensive surgeries every three to six months performed by world-renowned Dr. Patricia Burrows. Kelleigh has followed Dr.Burrows over the last twelve years from Boston, to New York City, to Houston, to Milwaukee.
At this point, there is no cure. Kelleigh and her family are at the mercy of research. A special fund, Kelleigh's Cause has been set up to help pay for research to find a cure.
If you are an AVM survivor, connect with Kelleigh at avmsurvivors.org