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). Her parents were told that she was at risk of hemorrhage, severe disfiguration, and congestive heart failure. Most importantly, they were told that there was no cure.
Since Kelleigh’s diagnosis, she’s had countless hours of highly specialized treatment several times a year in an attempt to control the progression of her disease. Each treatment puts those with AVMS at risk for blindness, paralysis, stroke and potentially death. All the while, she has waited for the medical research to develop the necessary chemotherapy agent to target it.
In addition to the procedures, Kelleigh has 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 control the progression of the AVMs. At age 10, the AVMs began to seriously affect her airway and she required a tracheostomy.
Through all of this, Kelleigh has had the very best in medical care and has strived to work with all of her medical team to share her story in order to help others affected by AVMs. She is a 2018 graduate of Le Moyne College, is pursuing her Master’s Degree and remains committed to helping all of those affected by AVMs.
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Mail: P.O. Box 127 Manlius, NY 13104