Kelleigh’s Cause, Inc is a 501(c)3 tax-exempt charitable organization founded by Kelleigh Gustafson. Our mission is to raise awareness and fund research for AVMs. As well, we want to create a community where those with AVMs and their families can turn.
At the age of four, after many unanswered questions regarding the growing discoloration of the right side of her head, ear, and neck, Kelleigh was diagnosed with a rare, inoperable, and life-threatening disease known as arteriovenous malformations (AVMs). She was told that she was at risk of hemorrhage, severe disfiguration, and congestive heart failure. Most importantly, she was told there was no cure.
Since her diagnosis, she’s had countless hours of highly specialized treatment several times a year in an attempt to control the progression of her disease. All the while, she waited for the medical research to develop the necessary chemotherapy agent to target it. Each treatment puts those with AVMs at risk for blindness, paralysis, stroke, and potentially death.
In addition to the procedures, she had numerous setbacks due to infection and pain because of tissue destruction related to the blood vessels causing abnormal or lack of blood flow. At age 6, she required a scalp resection because of the pain caused by dead scalp tissue. At age 7, she had a life-threatening reaction to a chemotherapy agent used in an attempt to treat her. At age 10, the AVMs began to seriously affect her airway and she required a tracheostomy. Through all of this, she managed to graduate from college and complete her masters degree in occupational therapy.
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Mail: Kelleigh's Cause P.O. Box 127 Manlius, NY 13104